2015 Gallery – A World of Thanks…
Australia |
|||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
||
België |
|||
|
|
||
Brasil |
|||
|
|
|
|
Brunei |
|||
|
|||
Canada |
|||
|
|
|
|
|
|
|
|
Deutschland |
|||
|
|
|
|
Ecuador |
|||
|
|||
France |
|||
|
|
|
|
India |
|||
|
|
|
|
Ireland |
|||
|
|
||
Israel |
|||
|
|
||
Italia |
|||
|
|
||
México |
|||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|||
Nederland |
|||
|
|
||
New Zealand |
|||
|
|
||
Österreich |
|||
|
|
||
Polska |
|||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
||
Portugal |
|||
|
|
||
Puerto Rico |
|||
|
|||
Sverige |
|||
|
|
|
|
Sweden |
|||
|
|||
United Kingdom |
|||
|
|
|
|
|
|
|
|
United States |
|||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Việt Nam |
|||
|
|||
Беларусь |
|||
|
|||
Россия |
|||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|||
Украина |
|||
|
|||
中国 |
|||
|
|||
台灣 |
|||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Lulu Luu 台北市 台灣I am Lulu, live in Taipei. I love my papa, he besides me here, he always accompney with me to fight with the monster of TSC every day. We don’t affraid, holp you do so like me. |
Emilio Ybanez Corpus Christi TX United StatesEmilio is a 9 year old energetic boy. He loves swimming and bbqing with his family. He has been seizure free for 2 years. |
nicholas Wiltscheck Otsego MN United StatesNicholas was born June 25th 2012 at 32weeks prematurely. At 22 months he started having seizures. he suffers from asthma also. His TSC has affected his brain kidney skin and face. #IAMTSC I am a warrior. |
Alexandria Armitage FL United StatesI had TSC since I was born still going strong and achieving my goals one step at a time as I encourage many others to do to. |
Mateo Santistevan Albuquerque NM United StatesMateo is an 11 year old wild and crazy boy. He was diagnosed with TSC at the age of 6 months and has been seizure free for 5 years. |
leah Richmond Oklahoma City OK United StatesThis is my daugher caden. She was diagnosed when she was 11 month’s old. She has tumors in her brain, she has skin lesions,angios on her face, she has thousands of cyst in her kidneys. We are currently dealing with the emotional side of tsc. |
Amy Bredeson Bluffton SC United StatesI started having seizures just before my 4th birthday. My parents took me to the hospital, where I was diagnosed with a rare genetic disease called tuberous sclerosis complex. I have tumors in my brain, left eye and skin. I have cysts all over my kidneys, high blood pressure, ADHD and hearing loss. I have been seizure free for two years now! I will eventually need a kidney transplant. I love singing and dancing, and entertaining my family. My name is Chloe. #IAMTSC |
Jette Marie Bielfeldt Jette Marie Bielfeldt Schwerin MV DeutschlandJette ist 28 Monate. Und ein großer Sonnenschein. Betroffen sind Gehirn , Herz & Nieren, Haut. |
Julie Edgington Rochester MN United States#IAMTSC Me and my daughter have tsc I was diagnosed at the age if five my daughter at the age if 10 months old. |
Julie Dooley Chicago IL United StatesThis is Hannah with her brothers who are always there to help! She loves to swing and be busy. She along with so many people with TS battle seizures daily, speech delays, and autism. Hannah has had some pretty amazing therapists and teachers who have helped along her on this path. She is amazing! Her smile brightens are world!! |
Joelle Brescia Hoffman Estates IL United StatesAlex is 23 years old. When Alex was born there was no genetic test for TSC. He was seen by a specialist and we were told he didn’t have enough major markers to be diagnosed. When he was 16 months old he had a radical right hemispherectomy for uncontrollable seizures. He was seizure free for 15 years. Alex’s seizures returned when he was 16. We were seen again by a specialist who gave him the test. At 17 Alex was diagnosed with TSC. Alex loves Wheel of Fortune, jokes, working, and family. |
elaine rosales Sinton TX United StatesMy beautiful lovely ki’leyana she 22 she had open heart surgery n was premier not even a month after we was home she just learn to crawl at 3 she 4 n non-stop not walking but fills my heart wit so much light joy n warmth amazing child of mine |
MAGNI MANUELA Merano Trentino-Alto Adige Italiavivere con amici che ti comprendono è il modo migliore per risolvere i problemi che porta la ST!! grazie a tutti voi!! |
Shelly Meitzler Wyomissing PA United StatesAshlin McFadden, 13 years old with TSC. Mason Meitzler, 18 months old with TSC. These are 2 of my 3 children, that live with TSC and the struggles that come along with it. I am amazed and proud of their resilience, as this disease has caused them many obstacles to overcome. These are my TSC heroes, we will continue to give everything but UP, to find a cure. They both suffer from epilepsy, brain, eye, and skin involvement. |
Allison Kramer Harrisburg PA United StatesAllison is 30 years old and was diagnosed with TSC at 3 months of age. She has skin, eye, brain, and kidney involvement. She has never had total seizure control. Allison also has congenital lymphedema of her right arm. Allison struggles daily with the manifestations of TSC, but she fights a strong battle with the support of her family and friends. Allison is very friendly and works part time at a local grocery store. She loves to walk, read, play video games, and color. |
Susan Mcbrine CA United StatesStacia Diaz , daughter of one of the TSA founders .. Lived and battled with tsc for 32 yrs.. We miss her every day |
JOY WANG 台灣我兒已是31歲 My child is 31 years old 他不會寫字卻很喜歡畫畫 He can not write but enjoys painting very much 他不會與他人溝通卻會笑臉迎人 He can not communicate with others, but is always smiling 他不會賺錢卻懂得有食物分享給他人 He does not know how to make money, but would share foodwith others 我只希望他每天都快樂無病痛 I just hope he is happy every day without pain |
JOY WANG 台北市 台灣My child is 31 years old. He can not write but enjoys painting very much. He can not communicate with others but is always smiling. He doesn’t know how to make money but would share food with others. I just hope he is happy every day without pain. |
Jackson Lai 台北市 台灣I’m 30years old. I was born in a sweet and happy family. My parents treat me well. My elder brother also brought me a dog to accompany me. The dog named Moby which is on the photo always stays home with me. I appreciated what they have done for me. I feel so lucky to be their family. |
Miran de Weerd Strijen ZH NederlandTwo of my three daughters and me, are diagnosted with TSC, also my mother and aunt. |
Wilson Izquierdo EcuadorUn gran luchador, a pesar del poco conocimiento de la enfermedad en el país sigue aun con nosotros. |
Adin Krischel Dwight IL United StatesThis is my son Adin. He is 15, and about to graduate from 8th grade. He has moderate autism/mental delays. He has tubers on his brain, aml’s of the kidneys, and a tumor behind his right eye. Adin is a well loved kid. Loves weather, and anything to do with Nature. He is looking forward to high school and being in the same special Ed class as his big brother Mason! #IAMTSC |
Bo Shuan 台北市 台灣I’m eighteen years old and an only child in my family. Although my mother has been suffering from my rare disease for many years, she is still face this and treat me well. I feel so sorry to make her angry from time to time. Nobody likes to get this kind disease, such being the case, we are supposed to accept it. My mother always encourages me when I’m depressed. There’s nobody love me like her, MaMa I love you so much beyond words. |
sebastian luzardo Tampa FL United StatesSebastian 8 years old siuzure free for 5 years and med free for 3 years,after 4 brain surgery. Speech delay and intelectual delay. Sebastian is loving,funny,love music . |
Rossella Invernici Laveno-Mombello Lombardia ItaliaI’m Luisa, Rossella’s mather. Rossy is a sweet italian child! She’s four years old in july. She loves music and she’s learning her first words: mamma, pappa, brava!! She’s really a great fighter!!! We love her with all our heart!!! |
Nicholas Wiltscheck Otsego MN United StatesNicholas is a loving sweet eneagetic boy. at 22 months old he started having seizures and was diagnosed with TSC. he was a premature baby struggled with asthma. He is affected by his brain face kidney and skin. He still has seizures. #IAMTSC #IAMAWORRIOR |
Liam Wettrick Columbus IN United StatesMy son Liam also has epilepsy & autism. He turned 5 in January and loves Curious George! He is a very happy little boy who always wakes up giggling! |
Victor Perez IsraelHi, I’m Victor from Israel #IAMTSC |
Rita Mason Springfield PA United StatesGia is a happy, outgoing, tough, smart 5 year old. Nothing can or will keep her down. |
hugo krifors Västerås Västmanlands län SverigeThis is Hugo! He will turn 3 years old this summer! He is a very cheeky little boy with a lot of energy! He is a TSC figher with epilepsy! Here he is dressed as Pippi Longstocking…which he is a big fan of =) |
Angela (Sissy) Vlasak Poulsbo WA United StatesSissy had her 1st seizure at 18 mos. She developed normally with seizure control. Seizures came back hard & by age 3 she was autistic & delayed in many areas. Sissy was always the happiest girl I knew! She had brain surgery at 18 when the seizures got so bad. Cognitively she peaked at 1st grade level. Emotionally, at 27 she is just 13. Her kidneys began to fail at 15. A feeding tube & meds kept her healthy until 2010 when dialysis began. She got a new kidney in 2013. She is a survivor, my HERO. |
Dakota (Kodi) Foster Poulsbo WA United StatesKodi was 3 mos. old with infantile spasms meds couldn’t control. Growing up, she had times of less seizing & also of relentless seizures of many kinds. At age 14 she was mostly non-verbal, already had 4 brain surgeries & was 18 months developmentally. She came to be part of our family then & gained a sister with TSC as her best friend. Now at 20 she functions like she is 3 & can use up to 55 words! The seizures are less now & she has kidney AMLs.She’s Happy, dances to rock, loves to camp & swim! |
Anna Klebanov IsraelI am 33 years old and i found out only about a few month ago that i am mosaic of TSC.I was missed diagnosed more then 10 years and i even had surgery on my kidney to remove angiomiolipoma .The doctors followed me for a few years untill another big angiolipoma came out ,only 2 years ago some of the doctors told about a rare disease that called Tuberous Sclerosis Complex.Since that day i am TSC brave warrior!!! I will not give up , help us to spread the world about TSC! |
Miranda Franklin Kirvin TX United StatesI was diagnosed with TSC when i was 5 yrs old. I have tubers on my brain along with other problems from TSC. I am 12 yrs old now. I love drawing and singing. I love my family. #IAMTSC |
Amy Chiu 高雄市 台灣I was flying treasure, now 19 years old, born six months epileptic seizures, after the diagnosis of TSC patients, knowing that the world has so many fellow sufferers, really surprised – we work together to defeat the disease ~ ** Come** |
Shirley Cisneros-Coronel Toronto ON CanadaTiago, my son, and Leo, my husband are the love & lights in our lives. They are an inspiration to how TSC is so different, from no symptoms except facial angiofibromas and tubers (Leo) to full out seizures, meltdowns, etc (Tiago). But we live daily to the fullest! Our little son has taught us so much love,patience & courage! He excels daily & tries it all & says “You so proud of me?” His laugh is contagious & endearing. Leo, well, awesome dad, husband & best friend! Love you! XO mami & Talissa |
Sonja Moore Bay City MI United StatesIsaac a 4yr old TSC Warrior. May 2nd marks one year seizure free after a lobectomy! Happy boy! |
Willow Stine Orlando FL United StatesWillow was found on the street in China at a guessed age of 2. Abused in an orphanage till 9 & we adopted her. She started school for the first time at age 10, 3rd grade in the US. We just learned she has TSC. Tumors in brain, heart, kidneys, eyes & skin. TSC caused intellectual disabilities. She is happy, sweet, innocent, loyal, honest. Loves music and family time. Kids in class argue every day over who gets to be her best friend. Over-medicated for 6 years due to seizures. Smiles thru Dr. appt |
Michael Jorski Kent WA United StatesMichael is 16. He is globally delayed and autistic. His Infantile Spasms were misdiagnosed for 3 years and went through 8 different medications before they were controlled with his first dose of Sabril (Vigabatrin). He is currently 12 years seizure free, 10 years no meds, and minimal behavior issues. He is a sweet young man who loves mom’s hair, lawn mowers, garbage trucks/cans, and containers. Oh yes, and he loves his family! Life is good, but his life would be better if we had a cure! |
Jackie Grenia St Louis MO United StatesThis is my daughter, Everleigh (Evie) Sophia. She was diagnosed at 9weeks. She has multiple brain tumors and heart tumors. She has had seizures, controlled at times with medication. She is a beautiful, sweet girl and tough as nails. She is loved dearly by her 4 brothers and is already teaching all of us more about true love than we had ever known before. We are blessed by her life and so glad that she chose us. She may be TSC, but she is also so much more!! |
Karen Berry Fort Worth TX United StatesOur TSC Warrior Haley! She has fought this disease bravely and will continue to battle. She is the joy in our lives and we are grateful every day for her smile and love. |
Norris Chiang 台北市 台灣Hi everyone, I am Norris, 28 years-old and I was diagnosed for TSC 3 years ago.For my lovely fellows, people might find us a bit weird sometimes and we might feel conscious and uncomfortable about it. And that’s because they haven’t had a chance to start knowing us and TSC. Believe me, from now on, they will. And that’s because, we, as TSCers is a group of brave, confident, people that spend a lot of hard works to make the world to know more about us. So stay positive, smile to those who . |
Lennart Pettersson Stockholm Stockholms län SverigeJag heter Lisa och är från Sverige. Jag älskar att dansa och sjunga. I`m Lisa from Sweden. I love tosing and dance. |
Marielle Hasselblad Stockholm Stockholms län SverigeAnarchist, 60’s DJ, Painter, Philosopher, Autodidact, ADHD, Asperger, LAM |
Elliott Frederick Murray KY United StatesThis is Elliott. He was diagnosed at age 2. He is mildly affected. He has a white patch in his hair, ash leaf spots, a small shagreen patch and seizures. He has been seizure free, however, since 2007! He is smart as a whip, is 11 years old and is the light of our lives! |
saja chaney Seattle WA United StatesKellan was diagnosed with TSC November 2014. He is 3, lives in Seattle and loves his dog, Banjo. |
Shannon Grandia Riverside CA United StatesMy husband an 3 kids all have TSC. Rob is 38 (diagnosed after the kids were diagnosed), Rylee is 14 (diagnosed at 18 mo.), Jake is 11 (diagnosed at 11 mo.) and Luke is 8 (diagnosed before birth). All 3 kids have epilepsy along with multiple other manifestations related to TSC including brain, heart, eye, kidney and skin involvement. Jake is also autistic with cognitive delay. Each day brings its own set of challenges, but with the challenges comes great rewards and celebrations! #iamtsc |
Jimmie McLeod Willard OH United StatesIn 2003, Jimmie was diagnosed at three months of age. In 2011,he had right frontal lobe surgery to stop from seizing 24/7. He is doing well today, and is learning more and more. Jimmie has a lot of catching up to do, and communication is getting better. Jimmie loves all things John Deere, airplanes and flying from Ohio to Florida. He has LOTS of Hot Wheels, and loves being outside. Jimmie has a Facebook page “Jimmie’s Adventure with TSC (Tuberous Sclerosis Complex)” I’m Jimmie and #IAMTSC |
Joshua Penman Lemon Tree Passage NSW AustraliaMy son has TSC he was diagnosed not long after birth due to Cardiac Rhabdomyoma(begnin heart tumour) from the age of birth to 1 years old Josh had been effected with begnin tumours in his heart/eyes/brain along with been diagnosed with epliespy also having white patch in his hair along with also some white patches on his skin with also just being diagnosed with little begnin tumours on his skin its now control with treatment. My little Joshie is the most happiest/strongest boy my hero #IAMTSC |
Pepijn De Schutter Mortsel Vlaams Gewest BelgiëPepijn in a good mood, 🙂 6 years old, mad about trains, happy, talkative, imaginative, restless, playfull, unpredictable, loving and lovely!! 🙂 |
Hannah Grace Jones Monroe LA United StatesHannah Grace Jones is 13 years old. She began having Infantile Spasms around 8 months old which later lead to the diagnosis of Epilepsy & TSC. Her IS was controlled fairly early. She has mild learning disabilities. She has SEGAs on the brain and AMLs on the kidneys. She has been seizure free for 10 years now. She recently became a patient at LeBonheur Children’s Hospital TSC Clinic in Memphis, TN. Hannah Grace fought & beat cancer (leukemia), & she says she will win her battle against TSC, too! |
Chelsea Jeanette Wolford Mifflinville PA United States#IAMTSC Born 4-24-95 passed 3-21-96 daughter of William J. Wolford Jr. And Kerry S. Baker Wolford Darrington. Sister of Alyssa M. Wolford. Grandchild of Roland Wm. Baker Sr. and Shirley J Baker and Linda and Perry Hughes. Loved but not forgotten. |
Zachary Nelson NE United StatesZachary is 3 years old and was diagnosed when he was 3 months old. His seizures are mostly controlled with medicine. He is so full of energy and loves to play with his 2 older sisters who he calls ‘my girls’. |
Hayley Cameron Lismore NSW AustraliaMy daughter Hayley is 10 and has TSC |
Peta Geurin QLD AustraliaMy 8yr old Cooper, diagnosed with tsc at 6yrs old. Has global delay, two tumours and small seizures which still getting tests on. The nicest, kindest kid I know. |
Monica Bonacci VIC AustraliaThis is our amazing daughter Aleshia, 6 years old. Diagnosed at 4 months old with TSC. She continues to amaze us day by day. Here she is sporting her “Rockstar hair do” after she had surgery in November last year. |
Greyson Schwaigert Collierville TN United StatesGreyson is 7 years old and was diagnosed at 3 months, due to Infantile Spasms. He struggled for 4 year with seizures of multiple kinds, has Polycystic Kidney disease, and Autism. He has endured countless tests, hospitalizations, and set-backs. Despite all this, he is the sweetest and happiest child in all the world. He still struggles with tasks that most 7 year olds mastered many years ago, but he is 3 years seizure-free and kicking TSC’s butt! |
Tuan Ha Hong Hà Nội Việt NamI’m Ha Le Minh Son, five year old. I’m Living in Hà Nội, Việt Nam. #IMTSC and I’m a warrior |
Susan Seggerman Salinas CA United StatesKylie is 11 years old (12 on May 30), but developmentally about 5 years, except for a few tween characteristics. Her TSC issues involve her brain, skin, heart, kidney, & liver, along with epilepsy, ASD, ADHD, anxiety, & migraines. She goes non-stop from the time she wakes up in the morning to the time her meds kick-in at bedtime. Through it all she loves life, and she loves being with family and friends. She can name a Disney show tune within a few notes, and truly loves all things Disney. |
Luca and James Semmens Port Lincoln SA AustraliaThis is Luca. She was diagnosed at 8 months of age. She has had several brain surgeries to remove tumours and has AML’s in her kidneys. She is very slightly delayed with her speech and age level. She is tenacious and she sparkles. James is her brother. He doesn’t have TSC, yet his life is equally affected. |
Hayley and Brad Hill NSW AustraliaMy son Bradley who is 11 years old and myself who is 38 years old. Both have TSC. |
Kris Romios VIC AustraliaThis is our Kristian, now 2.5 years old. Kristian was diagnosed at 7 weeks of age. Kris has undergone 3 rounds of brain surgery, but unfortunately still has regular seizures, he has very large tumours in his eyes and a SEGA which we are monitoring closely, along with kidney cysts. Kristian is globally delayed, but he is amazing and can be very loving, funny & cheeky- he is so much more than TSC and his courage and resilience is truly inspiring! |
Lachlan Herbert Maroochydore QLD AustraliaLachlan is 3. Diagnosed in utero. He is effected in the heart, brain, skin with ash leaf clouds and angiofibromas and kidneys. He also has autism. He is my superhero. |
Tyler Lim Perth WA AustraliaThis is our amazing son Tyler aged 12, diagnosed at 9 months due to a febrile convulsion, a day that broke our hearts hearing about all the things he would face, what he may or may not be able to do… It has been a rough lonely road not having any ‘physical features’ that stand out, kids can be cruel to what they don’t understand. Tyler has just started high school…he has made friends, he has been accepted, he now has confidence. |
Li Pei 高雄市 台灣Peipei heart congenital multiple primary tumors, birth heart failure, replaced by happy hearts, for the time being out of the Woods, was born six months for nodding epilepsy into Veterans General Hospital, examination diagnosed with tuberous sclerosis, with brain, heart, kidneys, skin lesions; peipei epilepsy often attack and cause damage to the brain, studied in special schools at present. Peipei is with time racing of small Angel, so Pei Pei mother grasp now, live in now, hopes can accompanied |
Heather Weber Barnesville MN United StatesThis is my son who was diagnosed at 8 years old after many years of doctors visits for different issues. Finally it was all put together as TSC. He has brain, skin and eye involvement. Still in testing for seizure activity, heart and lungs. He is a great boy who loves life and just pushes through the hard times and keeps going. |
Rachel Yu 台中市 台灣15 years old. seizure, autism, cannot talk, but can communicate with informative pointing tool. |
Christelle DELBERGUE Lannoy Nord-Pas-de-Calais FranceMon fils Louis-Tamsi est atteint de la Sclérose tubéreuse de Bourneville. Mais c’est avant tout un super et bel ado qui fait mon bonheur ! |
Debdatta bhattacharya Portland OR United StatesThis is our one year old son Arij. He was diagnosed 10 days before birth due to rhabdomyomas in his heart. He currently has heart, brain, skin and eye involvement. We are trying to control his seizures. Despite all his difficulties he is a happy boy who lights up our home. He is the center of our small family consisting of me, my husband and our 5 year old daughter. I couldn’t get him to hold the “IAMTSC” flyer without having him chew on it 🙂 |
Angelina Young Overland Park KS United StatesDetermined to not let this illness get in her way of life! |
Kayla DeChant Randolph WI United StatesKayla has been fighting the fight for 25 years. Taking on each day as anew adventure. |
Kathy Schmeichel SD United StatesThis is our daughter Laura who was diagnosed with TSC at 7 months. She has come a very long way. She has Autism and slight cognitive impairment. She words part time at our grocery store. She has a smile for everyone. |
tiffany usrey Oxford AL United StatesMy name is Tiffany I inherited this from my dad my daughter also has it as well |
Lauren Buhl Roscoe IL United StatesLauren is 16 years old. She was diagnosed at 13 months and has tubers in her brain. Fortunately, her seizures are controlled with daily medication. She is doing great as a freshman in Life Skills class at our local high school. She recently won a gold medal in the 50 meter dash and a silver in the softball throw at the spring Special Olympics. Her gold qualifies her for State. She loves to ride her scooter, sing, play the piano and guitar. She loves children and animals. |
Gabriel Holley Cañon City CO United StatesGabriel is a 9 year old, 3rd grader. He is a very energetic and upbeat kid with an amazing support system and LOTS of fans. His strength and bravery is a lesson to many. He is a huge fan of Star Wars and video games and He even has a worldwide outreach on his own Facebook page. Www.facebook.com/gabesjourney05 |
Zhi Hao Yang 台北市 台灣When I was one and half years old,I had a high temperature. My mother brought me to the hospital and took a ultrasound. After checking, I was diagnosed as a TSC patient because some calcium spots in my brain. I have seizure also. Now I’m 22 years old. I have been taken embolism twice in kidney. In these two years, I have a chance to take a new medicine. It’s really helpful for me. I deeply appreciate some people who have help me especially my mother. I’m a baker and I love my job. |
pascal swinkels Hoorn NH NederlandMy beautiful son Aidan is 4 years old and has TSC. We found out last years. It changed our whole lives. He is doing great however and is improving his speech every day. I am so proud to be his father |
Benjamin Bogue Lawrence KS United StatesLily is a very happy girl. She loves music and dancing. She has had seizures causing developmental delays. She had surgery in Aug 2014 and has been seizure free since! |
April Bryan Amarillo TX United StatesWhen I was about 6 months pregnant and I was getting a routine sonogram done and they found that Bryton had a heart tumor. He is now 7 years old living with TSC. He has epilepsy and sever ADD&ADHD. We get MRI’s done once a year and we see just about every doctor there is at least once a year . We are so blessed to have Texas Scottish Rite Hospital to go to. Bryton hasn’t has any brain damage and is very smart. He tough himself how to do times and fractions in the first grade! |
Manfred Willantner Wien Wien ÖsterreichI’m Tabea from Vienna / Austria , TSC diagnosis with 7 months , now have almost 11 years . I have seizures , target organs, brain, kidney , heart and skin .I am a fighter . #IAMTSC |
Aydan oakes Crewe England United KingdomAydan is such a lovely loving little boy, and really makes everyone feel special! He certainly doesn’t let TSC get him down! |
Sandy Rhodes Altoona PA United StatesOur son Camden was diagnosed with TSC at 6months of age after having IS. He takes Sabril and that has kept the seizures mostly at bay. He is now 22 months and full of life and adventure. He loves being outside or swimming. He is very loving, caring, and fun. He is the light of our lives that we wouldn’t trade for the world! He isn’t giving up and neither are we… Take that TSC! |
Brittany Runyon IN United StatesI am TSC! Diagnosed at the age of three. I have Angiofibroma’s, Enlarged finger, and Tubers that cover both of my kidneys. I have had five laser treatments for my angi’s and also a renal embolization in 09 due to a tuber taking the blood supply from one of my kidneys and shutting it down. Luckily they were able to restart my kidney and they are both functioning fine as of now. I also am expecting a baby boy this July and at this moment TSC is unknown for him we will be going in |
Megan Betts Silver Bay MN United StatesThis is my daughter Lydia. She was clinically diagnosed with Tsc at I think 4 months old. She has had good seizure control for about a year now. She also has kidney involvement. She is the bravest girl I know and my greatest teacher. |
Deborah Halasz Fernley NV United StatesThis is me! I was diagnosed with TSC after suffering a complex partial seizure in 2010. Since then, I’ve had two more complex partial seizures and multiple absence seizures. In 2011, I lost the ability to speak and walk. In 2013, I started speaking again, but it wasn’t until the end of 2014 that I stopped using a cane. I’m on two different seizure meds, but I still get dizzy and lightheaded a lot accompanied by migraines. Since 2010, I’ve also found I have poor memory and a poor attention span. |
Jason Merriman Lehi UT United StatesMy name is Jason. I appear to be a perfectly healthy little boy. Looking at me you would never know I have constant seizure activity. I was diagnosed with TSC when I was 7 months old. I am still the most loving and happy kid ever. I am on a medication to control my seizures but it is dangerous. I have many doctor appointments between my neurologist, ophthalmologist, cardiologist, and pediatrician. I get many EEG’s and MRI’s. I still love every minute of life and make everyone around me smile. |
Nehemiah Bauer Mobridge SD United States#IAMTSC Nehemiah, 11 loves to be around people, swing and cuddle with family. Along with TSC, he has autism, LGS and is completely non verbal. Nehemiah is blessed with two older brothers who would move the moon for him. |
Danielle Clark Canton OH United StatesDanielle is 19 and was diagnosed at 15 months old. Her seizures are currently controlled by medicine following 2006 brain surgery. Danielle also has tubers on her heart, kidneys, eyes and skin. |
Bailey Stromberger Iliff CO United StatesBailey is 5 years old and will be starting kindergarten next fall. Even though she has tumors on her brain, kidney and skin, Bailey is doing exceptionally well! She takes meds twice daily that have kept her seizure free for 18 months! She has taught our family to appreciate all the “little” things in life! We Love You Bailey! |
Keenan Creamer Long Beach CA United StatesKeenan is a happy and sweet little boy that’s almost 4 years old. He was diagnosed at 2 years old after a status seizure and 2 weeks later he was having up to 20 seizures a day: after a tuber resection surgery the daily seizures have stopped!!! (Still has fever induced seizures) He started preschool this year loves his teachers and has friends that love to ride bikes and play pirates! His current battle is with a growing SEGA and PKD. He’s our super hero! |
Mary Comeau Palmer MA United StatesThis is Hannah. Diagnosed with TSC at 7 1/2 weeks old, due to seizures. Currently, TSC affects Hannah’s brain, heart, and kidneys. She’s also delayed for her age. She has been on almost every possibly seizure med and the ketogentic diet to try and control her seizures. Nothing was stopping her seizures, so in April and May, 2014, Hannah had 2 part brain surgery. She’s been doing much better since surgery. She is a sweet girl that loves everyone, especially her baby brother. She’s our tiny hero. |
Nataly Lindgren Laredo TX United StatesThis is my daughter Nataly, she is 16 years old. She was diagnosed at six months old when she started to have seizures, it took a lot of tries on different medications to control them. She has been 11 years seizure free now. She is mentally handicapped, non verbal, has several tubers in her brain, lesions in her kidneys, facial angio-fibromas, ash leaf patches, autism and she is an ovarian cancer survivor. She loves to hear music, to swim, to swing, go to school and plays with musical toys. |
BARTEK LEWCZUK Warszawa mazowieckie PolskaBartek(32 lata), mieszka w Warszawie, w Polsce. Bardzo lubi, muzykę,jest fanem pianin i gitar.Choć wymaga opieki rodziny w życiu codziennym, wie dobrze czego chce, i mimo problemów ze zdrowiem jest kochanym,pogodnym młodym człowiekim. Bartek and his mom wish you all a Happy TSC Global Awareness Day ! |
Tony Klinzing Columbia TN United StatesTony was diagnosed at 3 months, he has shagreen patches on his forehead, nodules on his face, & skin tags. He has tubers in his brain, cyst & angiomyolipomas in his kidneys. Tony is a happy person, if he likes you, he will give you a hug. Loves to walk, he is an artist & photographer,& hates crowded places. He has a loving family, Mother(me), a brother & sister in-law, nieces, nephews, aunts & uncles. He will turn 32 on MAY 15, TSC GLOBAL AWARENESS DAY!! |
Henry Lai 台北市 台灣My brother is a TSC patient. I am two years older than he. When we were little, we always quarral with each other. I don’t know why his behavior is a little strange. Mama has been telling the reason ,and ask me to put myself in the shoes of him. It’s difficult for me. Till now, I’m getting more ages and I see some TSC patients appear, I know my brother is not only one. The more information I learn about TSC, the more sorry I feel. He ain’t heavy, he is my brother. |
Chastity Melloit Malaga OH United States#IAMTSC This is Shealyn; she is 12. |
Sophie Marks England United KingdomHi i am Sophie I have TSC, I have tumours in my brain, lungs, skin, eye, kidneys. I have had this disease since i was 4 months old and i am now 26. I take each day as it comes and i don’t let the condition stop me doing anything i don’t want to do in life. |
Caitlin Racenet AK United StatesCaitlin was diagnosed at 14 months. She is now a beautiful, funny, smart 9 year old. Although she has intractable epilepsy and autism, she is strong and does her best each & every day. She is loved. |
Adriana Smelser Charleroi PA United StatesAdriana started to have infantile spasms at 3months old and later diagnosed with TSC at 6months old. Currently at 2yrs old she is mildly affected with little to no speech, one sega and several lesions on her brain. She is a true fighter with a smile that just doesn’t stop. She is our angel that god blessed us with and we are thankful every day to have her in our lives. |
Ren-Fu Wang 台灣I am Ren-Fu,seventeen years old.I am happy every day.I bring TSC gift for Taiwan. I hope TSC friends enjoy this life. |
Christa Saganich McLeansville NC United StatesThrough the many hardships along the way my daughters have helped me through the road less traveled |
apple SHIH 高雄市 台灣I’m Apple, 11 years old. I’m a TSC patient. I have epilepsy.I don’t know what it is. When it happen, I feel evil is coming. It always affects my life.I met a new good teacher when I was third grade in elementary. She taught me how to conquer my fear. We prayed together and faced my illness bravely. My parents always tell me TSC is already one part of my life. We need to accept it. When I feel uncomfortable. I think “I am OK, believe in myself” I love painting. It’s a good way to release my pa |
Huei Jyun Huang 台南市 台灣I’m a TSC patient. My grandmother who is standing near me in the picture. She always treat me well. I appreciate what she has done for me. |
Cheng Ming Peng 高雄市 台灣I appreciate those who have helped me. My parents, my doctors, our association. Thank you all! |
Pei Cih Chen 台北市 台灣My parents are the best parents in the world. They raise me , love me, teach me. I am pleased to express my appreciation to them. |
Jing Syuan Jhan 台灣I’m one only child in my family. My parents treat me well, we have a happy family. Thank my parents and doctors, thank you all. |
Shu Yu Yu 台北市 台灣I’m the youngest girl in my family. Watching the photo, you can find my happiness and brightness on my face. I was diagnosed as TSC very late because I’m not that serious. Thanks God! Thanks my parents! Thanks Doctors ! I appreciate what they have done good for me. |
Mona Holmström Boden Norrbotten County Sweden16 year old girl with TSC. therapy-resistant EP, facial spots, kidney tumors, mental retardation, autism. I like music, movies,jokes and pranks. My favorite right now is Frost with Elsa and Anna. |
Elizabeth Navarro Puebla Pue. MéxicoA disease is no obstacle to love. |
Claudia Leitzbach Frankfurt HE DeutschlandJustin 14 Jahre hat TSC |
Wyatt Hudson Crafton PA United StatesThis is Wyatt! He is 21 months old! He sure knows how to put up a fight against TSC! |
Carlitos de jesus Gómez Abarca Los Reyes de Salgado Mich. MéxicoCarlitos is a great warrior and master of life, with’ve learned to have faith and hope but mostly patience as tuberous sclerosis is not an easy disease but not impossible. when she was 5 months pregnant they were diagnosed the baby tumors in the heart to be precise 8 small and two embracing heart, was born at 8 months with respiratory problems was overcome with days, at 22 days old present crisis was hospitalized for two weeks and there was diagnosed with tuberous sclerosis, the passage of the y |
Jack Kingston Las Vegas NV United StatesThis is Jack. He is super affectionate, sweet and unconditionally loving. When he touches your cheek, bumps his forehead against yours and looks into your eyes, your heart feels how incredible he is and your whole body is overjoyed and filled with love. His love is unfiltered, genuine and like no other love I have ever experienced. Jack has always had the most amazing aim (which can be good and bad, depending on if he is happy, mischievous or mad)! Give Jack a basketball and hoop, and he w |
Mariya Morgasova Москва г. Москва РоссияMari. 11 years |
Aliya Sharipova Татарстан Респ. Татарстан РоссияAliya 7 year |
Sofiya Sitnikova Краснодар Краснодарский край Россия11 year. Sofi |
Margarita Sokolova Саратовская обл. РоссияRita |
Alesiya Malgina Москва г. Москва Россия1.8 years |
Delanie Zimmer Liverpool NY United StatesBrave and beautiful |
Nikoleta Shirinova Сыктывкар Республика Коми РоссияNikki |
Arina Denisova Пермь Пермский край РоссияДенисова Арина 3 года. Пермь. |
Timofey Nechtalyuk Екатеринбург Свердловская обл. РоссияNechtalyuk Timofey 1,5 Ecaterinburg |
Liza Zamarina Мурманск Мурманская обл. РоссияЗамарина Елизавета г.Мурманск |
Amina Nirova Нальчик Кабардино-Балкарская Республика РоссияNirova Aminat, Nalchik |
Viktoriya Mairova Нальчик Кабардино-Балкарская Республика РоссияМаирова Виктория .15 лет.Город Нальчик. |
Danil Pokostiyaev Ростов-на-Дону Ростовская обл. РоссияПокостяев Даниил Андреевич , 03.10.2010 Рстов-на-Дону |
Lola Kenzhaeva Москва г. Москва РоссияLola 12 years My littele angel.Swims.She goes to school.Enjoying life))) |
Kira Popkova Кемерово Кемеровская обл. РоссияПопкова Кира 2,5 г. Г. Кемерово |
Demid Shegolev Самара Самарская обл. РоссияShegolev Demid 22.07.2013 Samara |
Indira Faizulina Уфа Респ. Башкортостан Башкортостан РоссияFaizulina Indira, Ufa |
Arsenii Tutaev Оренбургская обл. РоссияTutaev Arsenii, 1,5 года. Город Сорочинск. |
Char Verdin Flower Mound TX United StatesMichael is 24 years old and was diagnosed with TSC at 6 months of age. He has seizures, renal hypertension, is non verbal, and is cognitively delayed in all areas. Because he is non verbal his life has been a guessing game with regard to his preferences and dislikes, his pain and comfort level. He enjoys eating his favorite foods, playing in water, and attending sporting events especially #TexasRangers baseball games. |
Zarah Place NSW AustraliaZarah is 2.5yrs old and despite having had days of 50+ seizures and infantile spasms,spending large parts of her first years in and out of hospital and moderate global developmental delay is doing pretty well. The uncertainty and anxiety of what this condition will do for her future is still not clear, however we have a positive outlook and take it one day at a time. |
Courtney Brasell Greytown Wellington New ZealandHi my name is Courtney I am 9 years old and I live in NZ. I have Tuberous sclerosis Complex. My mum found out when I was 4 months old because I have white patches on my skin. I have multiple tumours in my brain and kidneys. I take pills to make sure I have no seizures. I have bumps on my face that I wish I didn’t have. My mum is trying hard to get some cream for my face but no luck yet. I love my life but I wish I didn’t have to have Tuberous sclerosis Complex. #iamTSC |
Zi Ning Shiu 台北市 台灣The little girl is my sister. She is not good when she was little. Our mother is a hair designer, she is very busy. So, I need to take care of her from time to time. Now, we go to musical class that TTSC hosting every Sunday. We love to got there and enjoy music with other TSC patients. |
Gu Hua & Zhi Hao Shih & Liao 高雄市 台灣We both are TSC patients. We know each other and play together because of our illness. |
Zhi Hao Liao 高雄市 台灣I’m standing between my parents. I’m the only boy in my family. My mother always encourage me to be strong to face every difficult things.They don’t have any treasure left for me. Yes, I will try my best to be a useful man in the future. |
Bo Liang Liou 高雄市 台灣I’m the first son in my family. In this awareness month, my family appreciate those who have done good things for us. Thank you all! |
Zhi You Chen 台北市 台灣Always contents! Always appreciation! Thank you all! |
Misha Voloboev Белгород Белгородская обл. РоссияMy son is my life! Misha is a very good and kindly boy, he goes to kindergarten and likes ice cream! |
Bo Suan Chou 台北市 台灣I was very naughty when I was little. My mother is supposed to stand me because she love me. I have epilepsy. Nobody likes this feeling. When it’s coming, my mother always comfort me tenderly.I like to play guitar very much. We create a band named “MenBug” including another patient and patient’s father recently. We have lots of fun while we are practicing together. My father is sitting besides me in the photo. He works hard for my family, I love him as well. |
Rong Chia Lee 台北市 台灣I’m the only child in my family. I was born in a family which is filled with happiness. Thanks to my parents, thanks to those who have done good for me. |
Sofia Coelho Sintra Lisboa PortugalSofia is 4 years old. She was diagnosed at 13 months when she began having infantile spasms. She has tumours in her brain, skin eyes and kidneys. She takes meds twice daily that have kept her seizure free for 3 years already. She is the kindest and sweetest girl we know, always giving hugs and kisses to everyone. We are blesses by her life and so glad that she chose us as her family. |
Yi Syuan Lee 台北市 台灣I was diagnosed as TSC patient when I was 6 months. I have Infantile spasms seriously. My mother accompany me in the hospital about 1 month without rest. I appreciate her beyond words. My father is a strict person. He always teach me how to do, what to do. I love them all. There are 4 peoples in this photo, the left one is my grandma. I love singing, singing can release my angry and find confidence. I appreciate those who have done good things for me. Thank you all! |
Deng Gui Ke 高雄市 台灣I’m a TSC patient and very serious. Now I’m in the hospital waiting for a surgery for brain. I have epilepsy without stop, that’s why I need to visit emergency often. My mother is very poor, she has to take care of me without choose. I don’t know how to express my appreciation for her because I don’t talk. MaMa I love you, thank you. I always murmur by myself. |
Witkoria Bortnik Nowy Tomyśl wielkopolskie PolskaWiktoria ma 7 lat i liczne guzy w mózgu, padaczkę, astygmatyzm i dużo zmian skórnych. Jest wesołą i pogodną dziewczynką, rozwija się prawidłowo. We wrześniu rozpoczyna naukę w szkole. 2 miesiące temu przeszła operację usunięcia nowotworu mózgu. |
Zhi Jie 高雄市 台灣We have a happy family. Always contents, always appreciation. |
Angela Martinez Los Angeles CA United StatesUCLA TSC Clinic and Research Staff |
Sheng Syuan 高雄市 台灣TSC Global Awareness Day! We appreciate those who have helped for us. Thank you again! |
Cian Hua Liou 高雄市 台灣We are glad to post our photo on TSC Global Awareness Day activity. My daughter is a TSC patient. We have confidence to face this rarely disease. We appreciate those who have helped us. Thank you all! |
Diana Tihonova Астрахань Астраханская обл. РоссияTihonova Diana 3.11.2004 Astrahan |
Elisaveta Bykova Ульяновск Ульяновская обл. РоссияBykova Elisaveta,5 years , Ul’yanovsk, Russia. |
Nicolás Ávila-Solís San Juan San Juan Puerto RicoNicolás was diagnosed at 5 months when he began suffering from Infantile Spasms. Although he has had many challenges, he always faces them head-on with a smile and good sense of humor! With the help of loving family and friends, as well as the support of amazing and committed therapists, teachers and doctors, he is thriving! His life is an amazing adventure and those of us who get to share it with him are the lucky ones! |
Jessie Lee 高雄市 台灣I was diagnosed as TSC when I was 25 years old. I felt unconfortable in my stomach one day. So I went to see a doctor and took a series of check. Unfortunately, I’m a TSC. I can’t do anything but crying. After many days, my father encourage me to face it. It’s so hard to accept it. Now, I have been working at TTSC association for many years. Thanks God! My condition is not that bad. I took a picture with my co-worker. The sitting one is me. I like to submit my photo here. Thank you all! |
Jobina Antochow-Piekema Grande Prairie AB CanadaOur identical twins Layton and Landon were diagnosed in utero and confirmed with genetic testing to have TSC1. They will be three in September. Layton is showing no signs and Landon’s seizures are being controlled with meds. They are happy and thriving and our hero’s! |
Lisa Chisholm Sudbury ON CanadaParker is a (almost) 3 year old little boy, who was diagnosed with TSC at birth. Everyday this little hero amazes us. |
Deborah aka DAC Cummings Parkton NC United StatesDAC was diagnosed with 6 months old. She is severely affected with brain, heart, kidney and skin involvement. She has Grandmal seizures and is Autistic. Despite it all she is a Hero who continues to amaze us every day with her bravery. She is TSC strong! |
Александра Климчук Шклов Могилёвская область БеларусьAleksandra 2011 |
Liza Kalandina Санкт-Петербург г. Санкт-Петербург РоссияЛиза Каландина, Россия, Санкт-Петербург, 30 августа 2005 г.р. |
Aleksandra Churmeeva Нижний Новгород Нижегородская обл. РоссияChurmeeva Aleksandra, 9 years, |
leonid Gamov Якутск Республика Саха (Якутия) РоссияGamov leonid 09.04.2013. Yakutsk |
Дарья Конопкина Владивосток Приморский край РоссияКонопкина Дарья 7 лет г. Владивосток |
Alexander Zemcovs Москва г. Москва РоссияZemcovs Alexander 16 years old Russia Moscow |
Михаил Алмазов Санкт-Петербург г. Санкт-Петербург РоссияАлмазов Миша, Санкт-Петербург, 5 лет |
Амина Денисова Люберцы МО РоссияДенисова Амина 8 лет Россия город Люберцы |
Виталина Артеменкова Орёл Орловская обл. Россия(Artemenkova Vitalina, 2 years, Oryol city) |
Sergey Evtushenko РоссияEvtushenko Sergey, 4 years, Krasnoyarsk |
Andrei Vasilev Санкт-Петербург г. Санкт-Петербург РоссияАндрей Васильев (Andrei Vasilev) 26.10.2013 Санкт-Петербург |
Artem Mazhurin Тула Тульская обл. РоссияMazhurin Artem 10 months in Novomoskovsk, the Tula region |
Alexandra Klimova Москва г. Москва РоссияKlimov Alexander, 19 years old, Moscow region |
валерий лычагин Оренбург Оренбургская обл. Россиялычагин валерий 4 года ,оренбургская область г.ясный |
Dima Kakadei Тольятти Самарская обл. РоссияKakadei Dima, 5 year, Togliatty, Russia |
Demid Shegolev Самара Самарская обл. РоссияShegolev Demid 1,9 year Samara |
Николай, Баранов Магнитогорск Челябинская обл. РоссияБаранов Николай, 4 года, город Магнитогорск |
Любовь Балаухина Белгородская обл. РоссияБалаухина Любовь г.Губкин Белгородская обл. 1.6 год |
Rhianwen Solise Hanson KY United StatesLillian is a strong, loving, and courageous five year old girl who never misses an opportunity to jump in a muddy puddle or cuddle any animal that she comes across. She has both TSC and PKD and will undergo surgery this summer to drain two cysts in her right kidney. Lily’s laughter and zest for life are contagious and she brings so much joy to her family and friends! |
Ivan Petrov Кострома Костромская обл. РоссияPetrov Ivan, 21 years, Kostroma |
Darya Taranenko Алчевск Луганская область УкраинаDarya Taranenko, Ukraine, Lugansk region, Alchevsk, 4 years (2010) |
Artem Chupin Магадан Магаданская обл. РоссияChupin Artem, 5 years, Magadan |
Mariya Serebryakova РоссияMariya Serebryakova, 11 month, Serpyhov |
Настя Кошелюк Екатеринбург Свердловская обл. РоссияНастя Кошелюк. Екатеринбург. 10.06. 2003г. |
Полина Иванова Петропавловск-Камчатский Камчатский край РоссияИванова Полина 12 лет г.Петропавловск-Камчатский |
Kseniya Pavlova Ростов-на-Дону Ростовская обл. РоссияPavlova Kseniya, 5 years, Rostov-on-Don |
Дмитрий Пузанов РоссияПузанов Дмитрий, 8 лет, город Красноярск. |
Chloe Quinn Kildare IrelandChloe was diagnosed at birth with tsc 1. She has no mayor affect other that a patch on her back and a few delvelpment delays. 3 years ago I found out I had it. I have a patch on my back which my mother was told at birth was a birth mark. I’ve no other affects from tsc. Back then in Ireland I’m sure tsc wasn’t even heard of. But we are happy and getting on with life. |
Laura Lubbers Palos Heights IL United StatesMy sweet sister, Ellyn, 51 years old and affected by TSC with seizures, learning difficulties and kidney AMLs. But she triumphs over all of that because of her sweet smile, wonderful hugs, love of singing and joyful personality. Love you, El! |
Keri Davis Beaumont TX United StatesAnna was diagnosed with Tuberous Sclerosis at the age of 7 months due to infantile spasms. Her manifestations include numerous tubers, subependymal nodules, and polycystic kidney disease. Sabril was our miracle drug and stopped her seizures immediately. She has now been seizure free for three and a half years without medication!!! We know the future will likely bring hard times, but Anna has taught us to live each day to the fullest. She is a true TSC fighter and we love her so much! |
Chian Yu 台北市 台灣Chian Yu is my second son. He don’t speak. He has lots of disorder which TSC patient have. Even though, I love him so much. He love music. He express his feeling while listening to the music. He cries and laughs when he enjoys the music. I don’t know what is happened to him. I just know something thought in his mind. It’ a tough and long way we need to face. Thanks God! Thanks everyone has helped us. |
Juliana Garlock Reno NV United StatesJULIANA is our amazing 3 year old! Diagnosed at 11 weeks of age due to intractable seizures, she underwent a 15 hour brain surgery at 7 months. She went from a documented seizure every 5-10 minutes around the clock to seizure freedom since surgery! The surgery did leave her with some right sided hemiparesis. She has cortical tubers, subependymal nodules, polycystic kidneys and many ash-leaf spots. She is sweet, smart, funny, loving & precious! She’s our youngest of 6 children & our only affected |
Dominik Wodzisław Wodzisław Śląski śląskie PolskaWitam. Dominik ma 8 lat. Chodzi do pierwszej klasy Szkoły Podstawowej.Klasa- autyzm z upośledzeniem lekkim. Od 2009 roku przyjmuje ewerolimus (Votubia). Choroba się zatrzymała, guzy nie rosną…Pozdrawiamy wszystkich 😉 |
Alicja Suchocka Nowe Miasto Lubawskie warmińsko-mazurskie PolskaAlicja jest miłą i pogodną dziewczynką. Uwielbia śpiewać i bawić się ulubionymi zabawkami. Bardzo lubi chodzić do kina, szczególnie na bajki Disney’a. Aktualnie jest wielką fanką Elsy z Krainy Lodu. |
Jacob Arnaout Bournemouth England United KingdomI have Tuberous Sclerosis Complex I love life and I’m very happy boy. Every day is a gift for me |
Алина Оганесян Вязьма Смоленская обл. РоссияОганесян Алина город Вязьма 2г |
Давид Гурский Россиягурский давид 6.05.11 |
Алина Неженцева РоссияНеженцева Алина |
Виктория Клыкова Калининград Калининградская обл. РоссияВиктория Клыкова. Калининград. |
Наталья Васильченко Анапа Краснодарский край РоссияВасильченко Наталья Александровна 13 марта 1992г Анапа |
Мария Клейман Екатеринбург Свердловская обл. РоссияКлейман Мария, Екатеринбург |
Валерия Боброва РоссияБоброва Валерия,9 лет г.Солнечногорск |
Магарита Котова Киров Кировская обл. РоссияКотова Маргарита 10 лет, город Киров |
Екатерина Пономарева Карачаево-Черкесская Республика РоссияПономарева Екатерина 1г.7 мес. …Карачаево-Черкессия |
Арина Бронникова Ижевск Удмуртская Республика РоссияБронникова Арина. 3,5 лет. Город Ижевск |
Евгений Патрикеев Пенза Пензенская обл. РоссияEugene Patrickeyev . 09.06.2008 year |
Илья Мокосеев Йошкар-Ола Республика Марий Эл РоссияМокосеев Илья Николаевич, 05.07.2013. Город Йошкар-Ола. |
Sid N IndiaWe are one of the many Indian families affected by TSC. Like most cases diagnosed since birth. It has inspired us to form a support group in India for all the loved ones affected by TSC. |
Sam Dale York England United KingdomSam is 7 and generally a happy boy who has tsc2 and pkd1. He also suffers from learning, behaviour and sleep issues. His epilepsy is not controlled but this does not stop him , love him xxx |
Brianne Holeman Santa Cruz CA United StatesBrianne is 25 years old. Diagnosed at age 4 after a status seizure robbed her of her milestones, she has fought back and worked hard to get where she is today. She has brain (SEGA,cortical), kidney AMLs, skin, heart involvement, Autism, and LD. #Brianne#IAMTSC |
bethany morgan Moorhead MN United StatesHere is Ian! He is 9 years old and has TSC type 1. |
Massiah Jones Dover DE United StatesMassiah was diagnosed with Tuberous Sclerosis Complex during uetro. My Warrior was born with tumors on his brain and in his heart. He also has tumors behind his eyes and cyst on his kidneys. He started having seizures at 1 week. At 6mths he was diagnosed with epilepsy. Massiah has developmental and physical delays. I was told that he would be mute and mental disabled due to the amount of white brain matter, tubers, and tumors on his brain. Doctors also informed me that he would need a wheelchair |
Naomi Gillespie Dyer IN United StatesNaomi was diagnosed at nine months after suffering from infantile spasms. She is developmentally delayed due to the effects of TSC. She attends a special needs kindergarten and requires speech, occupational, and other therapies. (Christopher, father and also pictured, is the genetic originator but is not receiving treatment. |
Ethan Gillespie Dyer IN United StatesEthan was diagnosed after a younger sister had severe infantile spasms. He was having auras and subclinical seizures as a result of TSC. He loves to play piano and organ, to read and study. |
Michael Barnes Los Lunas NM United StatesI am 62 years old, love life and laugh a lot. I LOVE red and green chili! I have TSC in my brain and lost one kidney. Thanks to recent scientific research, I now take medications unavailable to me when I was a child. I recently started taking afinitor for my remaining kidney and the Doctor said one day I might even start talking. That would be AWESOME! |
Elsie Gillespie Dyer IN United StatesElsie was diagnosed after a younger sister had severe infantile spasms. She has atonic seizures that are responding to medication. She loves music, art, and crafts. |
Elsie Gillespie Dyer IN United StatesEsther was diagnosed shortly after birth. Her seizures are responding to medication. She loves to play with her siblings. She is learning new words and insists on books at bedtime. |
Laina Cady Elmira NY United StatesLaina was a very healthy baby, meeting all developmental milestones……. Until 15 months old when she began having infantile spasms. A brain MRI showed tubers and nodules and she was diagnosed with TSC 1 in April 2014 at 20 months old. She now has daily spasm clusters along with partial seizures and tonic clonics. She has been through so much this past year and she has so much further to go as we are determined to stop her seizures. She has a great smile, vibrant personality and is so sweet! |
Jay Sta Maria Vallejo CA United StatesDiagnosed with TSC when he was 5 months old. Epileptic and autistic. Loves to play basketball, blow bubbles and listen to music. |
Jay Sta Maria Vallejo CA United StatesDiagnosed with TSC when he was 5 months old. Epileptic and autistic. Loves to play basketball, blow bubbles and listen to music. |
Reuben Dau Darwin NT AustraliaThis is my stepson Reuben, 18yrs, who has lived with me since he was four. He just finished yr12 at a special school. He has an intellectual disability, epilepsy and pseudo seizures. With the help of his school he has achieved Cert 2 In Retail through the local University. He is amazing at running and he has completed in special Olympics and Oceanic Para-Olympics a few years ago. He is a hard worker and is always willing to lend you a hand. I am extremely proud of him for always trying his best. |
Lily Kerr Camperdown VIC AustraliaLily is a beautiful, happy 12yo girl who loves life! She has 3 younger sisters (and loads of cousins) who she loves spending time with. Her favourite things in life are music, singing, chocolate, her family, her best friend Molly, swimming, family holidays, attending school and playing on her iPad. ‘Different but not less.’ |
Mac Willacy New ZealandHi I’m Mac and I’m someone who hasn’t let my TSC put me down. I am a reader, I play a whole lot of sports like soccer and hockey, I’m also really good at acting and I play 2 instruments, the drums and guitar. As you can see I am involved in a whole lot of things and TSC is just one part of my identity so be proud to have TSC and remember that this is the thing that makes you unique. So keep up hope and some day I’m sure you will be happy like me. MAC 13 years old |
Thomas Anderlind Åre Jämtlands län SverigeThomas is 35 years old. He likes outdoor-life, ie. Skiing, canoeing,horse-riding and scouting. |
Eloise Bird Heaney Melbourne VIC AustraliaThis is Eloise. Now 14 months old she was diagnosed with TSC at birth. After focal seizures she had surgery at 9 1/2 months old and has been seizurw free since! She loves animals and is a happy cheeky toddler. While a slightly late crawler, now we can’t keep her out of mischief! We love her to pieces! |
Maria Griner Bydgoszcz kujawsko-pomorskie PolskaGreetings from Poland 😀 |
Joanna Najda Szczecin Województwo zachodniopomorskie PolskaAsia ma 8 lat i chodzi do pierwszej klasy integracyjnej. Na codziennie jest szczęśliwym i pełnym energii dzieckiem. Uwielbia się bawić i oglądać Krainę Lodu! Jest wielką fanką Elsy i Any. W wieku płodowym (30 tygodniu) przypuszczano już u niej TSC. |
OSUCH DOMINIKA Radziejów kujawsko-pomorskie PolskaDominika ma 20 lat. Chorobę zdiagnozowano u niej w 7 miesiącu życia. W 200 roku była operowana – usunięcie guza sega. Aktualnie od 2 lat leczona Votubią. |
Pushkar Sharma India#IAMTSC I am 10 and have three brain tumors caused by TSC. |
Nichole Brown Bowling Green OH United StatesWhile I was pregnant during a normal checkup the Doctor had trouble hearing the babies heartbeat, I was sent to a high risk Doctor for an ultrasound, who told me my daughter had 7tumors on her heart, I was sent to a cardiologist who took a look at my heart and I also had 3tumors, finally after 4 years of knowing I had Demylination in my brain I had a diagnosis of TSC after I delivered a healthy baby girl I began having seizures, we are currently waiting to get into Cleveland Clinic. #IAMTSC |
Austin Robinette Baltimore MD United StatesAustin Robinette is a beautiful soon to be 7 (in June) year old boy. He brings so much joy to our lives and we all love him so much!! |
Katrina Evanochko Calgary AB CanadaMy younger sister was born with TSC 30 years ago. My family has always done our best to raise awareness. This year I did it by adding some color to my life 😉 |
Beth coles Bilston England United KingdomBeth is 18 and was diagnosed at 7 months, she has daily seizures, challenging behaviour, tumours on her brain, heart, kidneys and skin! We are presently waiting to have brain surgery to remove just one of her tumours! She goes to a SLD school. At her best Beth is a lovely friendly girl but can change in a split second into a really nasty person but life with her makes me very proud. |
John Lyons West Chester PA United StatesZachary is a 5 yr old boy who loves numbers, letters & words, as well as astronomy. His ability to remember and memorize that which interest him, is remarkable. His 6 yr old brother Dominick, means the world to him and is his best friend. Zachary recently completed a gymnastics class, attempted T-ball but with less success, and is currently enrolled in swimming lessons. Zachary has a fantastic sense of humor most times and is an inspiration to his entire family |
Nicole Hutchison Ajax ON CanadaMackenzie is a beautiful 14 year old young lady. She is very artistic and loves horses. Mackenzie has a kind heart and gentle spirit that makes her loved by all that meet her. |
Tori Joyner Buena Vista TN United StatesHi! My name is Victoria, but everyone calls me Tori, and #IAMTSC. I was born on May 15, 2006, and diagnosed with tuberous sclerosis on July 24, 2006, after showing signs of seizures and being hospitalized for a week. I am now 9 years old, and have been siezure free since I was 3. I am in first grade and I love my school. It has been a struggle, but it has made me and my family so much stronger. |
Kendall Lopez Woodsboro TX United StatesKendall was diagnosed 11 days after birth after finding cardiac Rhabdomyomas, tubers in her brain during an MRI and retinal harmartomas. Kendall had her first seizure March 12 at 11 months (14 days before her 1st birthday). She does not let anything slow her down and continues to grow just like any other child. |
Amy Didas Gettysburg PA United StatesAbi is 10 yrs old(3-4 level). she was diagnosed with tuberous sclerosis at 2 yrs old. She has epilepsy, autism, learning delays, behavior and sleep issues, so many tubers in her brain that they can’t count them, cysts on her kidneys that haven’t been problematic as of yet, facial angiofibromas, shagreen patches and white spots here and there . She still has seizures on a daily basis. She is in a life skills class in the 3rd grade. She has made some developmental progress. She is developmentally |
Miguel Frazão Vila Franca de Xira Lisboa PortugalGentle, fun-loving, loves football, most wonderful son in the world. |
Jennifer Waldron CT United StatesMy name is Jennifer, and I was diagnosed with TSC at age 4. I am mildly effeted and my hope for the future is to find a cure for TSC. |
Howie Brewer New City NY United StatesThis is my son, Anthony. He is 9 years old and was diagnosed with TSC the day before he was born. |
Alila Blackburn Melbourne VIC AustraliaI love singing, drawing, dancing and smiling. |
Stephanie Green Grand Prairie TX United StatesSarah Green 2 1/2 years old – rhabdomyomas, tumors on the brain and epilepsyAustin Green 6 years old – rhabdomyomas, recent heart surgery, white macules, shagreen patch Stephanie Green 33 years – seizures due to tumors on brain (controlled with meds), hypopigment macules, shagreen patch, angiofibromas, teeth involvement |
Naomi Naiztat New York NY United StatesBen is 27-month-old toddler who is full of life. He is social, funny and loves to engage in play with his older brother. Ben has had seizure control for about a year and receives a variety of EI services. He also had PKD. Ben is a resilient little guy who keeps us on our toes. Ever since his diagnosis at 8 months old, our life has been like a roller coaster. We are blessed that he is doing well. |
Kathi Dills Great Falls VA United StatesOur son, Stevie, was 6 months old when diagnosed with TS – 36 years ago. He has a tough case being nonverbal, autism, severe intellectual delay, tumors in his organs, etc., and needs 100% care in a group home. He is happy though and we love him and putting our efforts into finding the cure! |
Drew DeMarlie Milan IL United StatesDrew is a happy, fun-loving 11 year old boy. He loves playing baseball and riding horses. |
Benjamin Valdez Pearl City HI United StatesBenny is not just TSC, he is so much more! Such an amazing inspiration and ray of sunshine for anyone that meets him!! |
L Marks New York NY United StatesE loves to read, organize his Pokémon cards and play with his friends. He was diagnosed with TSC at age 3, when he developed facial angiofibromas. Seizures started soon after, but they have since subsided and, at age 8, he no longer needs medication. We’re grateful for his current good health and hope that more research will soon find better treatments and a cure so he can continue to thrive and be the scientist he dreams of becoming. |
Noah Shulist Ajax ON CanadaHi, My name is Noah and I live in Ajax, Ontario. I am 12 years old, I love to play with LEGO and participate in outdoor sports. I love to ski and swim, and my favorite hockey team is the Montreal Canadians. |
Georgia Lewis-Pitt Charlotte NC United StatesGeorgia is 8 years old, diagnosed at 10 months when she had her first seizure. She is developmentally delayed, but we fight to give her the best chance of living independently one day. She is a sweet girl and truly a ray of sunshine in our lives. |
Corrie Weaver Windsor ON CanadaClinically diagnosed with TSC 1 at six months old after an EEG and MRI confirmed seizures and infantile spasms. My daughter, Celeste is 6 years old with a intellectual learning delay, multiple ash leaf and shag green patches. |
Kristen Skodras Scituate RI United StatesRylee is 7yrs old and was diagnosed with TSC at 4 mths. She has 10 tumors in her brain, 3 cardiac rhabdomyomas, 2 tumors in her kidneys. She takes 3 seizure medications daily to maintain seizure control. Rylee takes dance lessons and loves swimming! We wear blue for you, Rylee! |
Heidi Dotson Plumas Lake CA United StatesThis is our 4 year old daughter Miley. She was diagnosed with TSC at 4 months of age when we notice white spots on her skin which prompted visits to many specialists. Her MRI showed 5 tubers in her brain and an echo showed a cardiac rhabdomyoma. She started having Infantile spasms at age 8 mos and were 100% controlled by 1 year. She is doing great! Loves to sing and dance and is the light of our lives. |
madhuri pivvada Bengaluru KA IndiaMadhuri is 18 years old and she is diagnosed TS @ 9 months. She is epileptic and taking 6 combinations of anti epileptic drugs.because of these drugs she is very drowsy.her brother is 12 years old and fine. She goes to special school and her verbal skills severely affected bad.she is physically fit and healthy.She does her daily activities without any issues |
Nadine Alves Belo Horizonte MG BrasilFlávia is 29 years old. She was the first child diagnosed with TSC in Brazil. Her mother runs for 15 years the Brazilian Association of Tuberous Sclerosis, helping other people around the country with the Complex. |
Kade Morgan Oxford AL United StatesKade was diagnosed at age 1. He inherited it from his father. Up until age 3, you couldn’t tell anything was different from any other child. At 3, the bottom fell out though. Kade is now 9, he has been in the psychiatric unit 10 times since he was 3. He has over 10 psychological disorders, a brain tuber, learning disabilities, and we recently found out he has some hearing loss. Spring of 2015 marked the first time in 5 years Kade hasn’t had to go into the P.U. |
Nadine Alves Belo Horizonte MG BrasilItalo is years old. He has TSC and Autism. He doesn’t speak, but is an happy and interactive child. |
Nadine Alves Belo Horizonte MG BrasilKetleyn is 7 years old. |
Shae Sunahara Chino CA United StatesHere’s my sweet Shae, from California, but here in Jamaica, loving the feeling & freedom of the sand & surf! Shae’s 14 & was diagnosed as a baby. Despite all our efforts, her seizures haven’t stopped, after all these years & are finally taking their toll. Still we delight in her humor & funny routines (she has autism, too). I love when our eyes meet & we speak without words (she doesn’t have many), then end with a smile. I’m so proud & grateful God choose me to be her Mom. |
Emma Leist Casper WY United StatesMy daughter Emma was diagnosed at 16 days old. She has brain, heart, kidney, skin and eye involvement. She is globally delayed. She is a little love, she loves people and doesn’t know a stranger. Emma has daily seizures and is on numerous medications to help improve her quality of life. She is a fighter! We are so thankful for all the research that has found medical treatment and interventions that have helped her through this journey. |
Никита Толстов Михайловка Волгоградская обл. РоссияНаш Никита самый светлый, радостный особенный ребенок. Ребенок Бога. Ему надо уделять все свое время, но это стоит того, когда он начинает меня понимать, улыбаться и протягивать руки, что бы обнять меня. |
Evangelina Figueroa Victorville CA United StatesMy daughter Evie was diagnosed with TSC at 3 1/2 months of age. After many seizures her doctor decided to do an MRI of the brain where they found multiple tubers in her brain along with a Sega tumor. She also had tumors in her heart, hemartomas in her eyes as well as the white marks on her skin. She was also diagnosed with epilepsy and at the age of 4 she was diagnosed with Autism. Through it all she continues to amaze us with everything she has overcome and conquered! She is truly AMAZING! |
Weronika Wypchło Kielce świętokrzyskie PolskaShe has ten years. She ill since birth. Is epilepsy drug-. Does not say. It is very joyful, cheerful child. |
Karol Siuda Bydgoszcz kujawsko-pomorskie PolskaPozdrawiamy wszystkich chorujących… Cierpliwości i wytrwałości w walce z chorobą. |
MAGDALENA DUDEK Slough England United KingdomMagdalena is 9 months old, she was diagnosed when she was 10 weeks old with TBC. |
Sarah and Rebekah Price PA United StatesWe are 15 years old and identical twins. We have tsc, but it does not have us! |
Lisa Trujillo Fort Worth TX United StatesThis is Sophie, she was diagnosed at the age of 9 years old. |
Vaughn Challingsworth Pittsburgh PA United StatesI am Ali and I am 10 years old. I was diagnosed with TSC as a baby. I have battled seizures all my life but I have never let it stop me! I love sports, camping, traveling, dancing and playing with my friends. I have great teachers in school that help me accomplish my goals. I love to draw and sing and play with my dogs. I am a happy kid! |
Teresa Corbett IrelandMy beautiful princess Laoise 🙂 |
Abigail Blevins Raceland KY United StatesAbby was diagnosed at 7 mos and is currently 9 years old. She is the sweetest heart you will ever meet and genuinely loves life. |
Julia Nowak Świętochłowice śląskie PolskaJulia |
Max Mace Keighley England United KingdomHere’s my little TS warrior Max who was diagnosed with TS and 4 months old when he started suffering from infantile spasms. Max has a number of tubours on his brain which cause him to have epilepsy & development delays. Despite all his problems Max is a happy chappy who is full of life and doesn’t let TS hold him back!!This little man is my Hero!! 😙💙 |
Abigail & Amelia Cooper Irvine CA United StatesAbby & Amelia are affected by TSC differently, but both are impacted. Between the two of them, we have experienced seizures, autism, developmental delays, brain surgery (each), kidney involvement, anxiety and depression, just to name a few of the most serious issues. |
Erik Larson Burnsville MN United StatesI am TSC. I was diagnosed when I was 6 months old because I was having infantile spasms. I’m 28 now and I live at home with my mom. I have all the manifestations of TSC except LAM. I take 3 seizure medications and I have a VNS but I still have seizures. I attend a great day program during the day and evenings and weekends I hang out with mom and our 2 cats. I am TSC, and I am loved. |
Angelika Kodat Datteln NRW DeutschlandOur daughter Anni, 22 years old, riding her Special bicycle |
Brandi Lowe Urbana IL United StatesThis is Heather. She was diagnosed with TSC at 6 months when she starting having seizures. We now know that she has lesions in her eyes, skin, kidneys, and brain. Heather never slows down though. She is a wonderful little girl and the joy of our lives. |
Mary Garnett Roanoke VA United StatesMy name is Owen.I have involvement in my brain, heart, kidneys and skin. I had brain surgery before my first birthday. I am the happiest little boy you will ever meet. |
jerome marlier Charbonnières-les-Bains RA FranceIt’s my daughter Anna, two years old |
CHELSEA MILLER Corpus Christi TX United StatesChelsea is a survivor. She’s beautiful, smart, and determined. She’s a typical teenager who loves to sing, dance and play her flute. Life with TSC hasn’t been easy for her but she takes on every challenge full force. She’s our inspiration and a true blessing and miracle from God. |
Samantha Wiemuth Arlington TX United StatesMy husband Jamison and son Zander both have TSC. Jamison was diagnosed 17 years old, Zander was diagnosed at 6 months old. They love to fish, play baseball and have bonfires!! They are my superheroes!!! |
Sabina Protyga Zabrze śląskie PolskaPatrycja i jej brat Paweł chorzy od urodzenia, Paweł ma padaczkę lekooporną |
Danielle Galli Tulare CA United StatesMy son tyler is a champion and a walking miracle. Although he has all the physical aspects of TSC, by the grace of god his symptoms are very minimal. We learn about new findings of tumers on his organs with his yearly MRI’s, but continue to have normal organ function. Tyler doesnt let TSC be an obstical in his life. Hes still a star athlete and a rolemodel for his peers. Im proud to be his mother. We can all learn from children how to handle what we can not control. #IAMTSC |
Alice Hardie Concord CA United StatesAlicia is a brave, happy, joyful girl. Her TSC is very involved. She had brain surgery at 8 mo and again at 10yrs. She is non verbal and her cognitive level is 2-4 yrs. We love this girl so much. She has inspired us to live more meaningful lives, to love deeper and to appreciate the little things. Whoever meets her can feel how truly special she is. She tries so hard everyday to be the best she can be. She is a hero to her family and we could not love her more. She is a true TSC warrior. Thanks |
A DAWKINS Gibsonburg OH United StatesIdentical twins, Olivia and Delaney Dawkins, were diagnosed with TSC at 5 days old. Living with TSC has daily challenges but these girls are determined to live life to it’s fullest. We love our TSC warriors! |
Clara White Santa Clarita CA United StatesClara was diagnosed in utero due to cardiac rhabdomyomas. At a week old, she had a pacemaker placed to help her heart. At 4 months, she began to have seizures, which turned into infantile spasms. At 2 years old, they removed her left frontal lobe. She was seizure free for a year.She is on the Autism spectrum, non-verbal, global delays. She is 9 years old and is the most courageous and happy person I know! |
Missy Barrett Selma AL United StatesThis is Joshua, 11 years old. He had IS and was diagnosed with TSC at 6 months. He was put on Sabril for a year. He was seizure free for a few years. In 2010, he had a seizure and was put on seizure meds again. He has been seizure free since then. Right now he is on Vimpat, Lexapro, and he is taking Afinitor for his SEGA’s. He is behind some on learning but has an imagination out of this world and is so sweet. He can beat a video game in no time flat! He doesn’t let TSC get to him. 🙂 #iamtsc |
Amanda Gray Canton OH United StatesI Have TSC Was Diagnosed with It at 18 months Old. I Have Tumors In My Brain and In My Kidney’s Not Sure about my liver but I know I am clear of tumors in my eyes as of right now. I sure Hope It Stays That Way. I do have a few in my lungs very small case of it Thank Goodness. I Would Feel alone to This Day If It Wasn’t for Shane Kinard and meeting others With TSC Because of Him! |
Felix Bobos Wien Wien ÖsterreichFelix is a TSC-Teenager. His live is really hard now because of his autism. He can`t speak but he understands everything. So he is often verry sad and harms himselfs. But we love him and are so proud to be his parents. Our beloved son!!! |
Zuzanna Komaniecka Lublin lubelskie PolskaMy name is Zuzia. I’m 7 years old. I love to read books and play with Peppa Pig toy.Greetings from Lublin, Poland! |
Bartosz Górski PolskaBartek ma 16 lat .Choruje od 3-ego miesiąca życia. Obecnie od 3 lat na Votubii |
Marni Sanders Los Angeles CA United StatesThis is Ella and she has TSC and PKD. She is doing well on medication and hasn’t had a seizure in 2 1/2 years. We are so lucky to have her in our lives and cherish every day with her. #IAMTSC |
Jennifer Bevans Muskegon MI United StatesHannah, age 7. Diagnosed 2 days prior to birth. First seizures at 1 month. Has brain, heart, eye kidney and skin involvement. Functions as a VERY happy 2-3 yr old! #iamtsc Love this little girl with all my heart! |
Danielle Stecki Livingston NJ United StatesMy name is Danielle. 22. Born with TSC. Involvement in almost all of my organs. 9 facial laser surgeries over 8 years. Discovered LAM last year as result of TSC. 2 lung surgeries and 2 months of chest tubes. After all that I have conquered in my life I am finished with my 3rd year of college. Will graduate with my BA in Art next May following with my MA in Education/Special Education a year later. I am a fighter and I will never let TSC bring me down! |
Evan Moss Alexandria VA United StatesHe has TSC but it doesn’t have him! |
Alexandria Armitage Fort Lauderdale FL United StatesI was diagnosed with TSC at birth I still remain brave and strong as ever I will always be TSC Strong! 😉 |
Tarra Hassin Albuquerque NM United StatesColin is a sweet boy, almost six years old. Diagnosed at 10 weeks. With intractable epilepsy, autism, kidney angiomyolipomas, retinas, skin involvement, he has plenty of challenges ahead. Still, he works hard every day to learn to communicate and inspires love everywhere he goes. |
Matthew Comeaux United StatesMatthew is 15 years old and enjoys watching railroad crossing bars! |
Brianah Doeden Alvaton KY United StatesMeliah is my beautiful 2 1/2 year old daughter who was diagnosed with TSC after developing seizures at 4 mos old. She has brain and skin involvement. She is the light of my life along with her twin brother, John, and her older brother, Jake. |
Kim Snyder PA United StatesJustin is a very happy young man who will turn 18 in June. He loves all kinds of music on his IPod. Justin also likes to be outdoors and ride his bike. He was diagnosed when he was 3 months old with the onset of seseizures and infantile spasms to follow. Justin brings many smiles and happiness to everyone he meets. My hero!#IAMTSC |
Kristen Foster Greentown IN United StatesCarter showed his first signs of TSC at birth due to having tumors in his heart. At 4 months old Carter was diagnosed with Infantile Spasms – a rare form of epilepsy associated with TSC. At 6 months, he was diagnosed with TSC. In Jan 2014, we found 3 tumors forming in his brain. The most recent diagnosis leaves our family unsure about future complications. Even though the future is uncertain, we are putting our complete trust in God. We know He has amazing plans for our rambunctious little guy! |
Aaron Dillon aka. Dilly Burgess Bradford PA United StatesIs 13 years old. Dx with TSC @ 1 yr old, shortly after seizures began. Has brain, kidney, eye and skin involvement. Diagnosed with Autistic Disorder before he turned 3yrs old. Non-verbal. With ABA/VB, he can communicate with some true, some modified ASL. Had brain surgery @ 7 yrs old. Struggles with self injurious behavior at times. He is moderate- severely affected by TSC. He functions as if a 2-3yr old. Over the years he has taught us to appreciate what we have and not to sweat the small stuff |
Michele Lyons New York NY United States#IAMTSC This is my 16 year old son Nicholas. He was diagnosed in utero by the cardiac rhabdomyomas. He has skin, kidney, heart & brain involvement. He started having seizures at 2 months & infantile spasms at 11 mos. he has Autism and is developmentally delayed. He loves to sing and play basketball and his older brother just taught him how to ride a bike. We are so proud of him! He always has a smile on his face!! |
Nikki Seefeldt Easton PA United StatesI am an adult living with TSC and LAM. I am an avid volunteer in reviewing research proposals from an adult perspective and enjoy rolling up my sleeves and helping and meeting new individuals and families. I also try and mentor people in self-advocacy and am a former member of the Board of Directors. |
Charlotte McCollum Kent WA United StatesCharlotte is 6 years old now and was diagnosed at 4 months. TSC has been cruel: infantile spasms, difficult to control seizures, brain/heart/kidney involvement, G-tube and the Keto diet, etc. But she isn’t finished fighting. She never will be. She’s a brave, sweet girl and she’s a hero. |
Evie Bradley Tallahassee FL United StatesEvie moon is the love of my life. Has ups and downs but is full of so much love.she was first diagnosed @eight months old after grand mal. (not recognizing seizure during her sleep). She has tubers scattered on brain and is struggling in her ESE classes. Has eye issues not sure if connected to tsc. Anger,behavior,emotional,cognitive are things we struggle with daily (single dad)she is very energetic she has alot of people who love her here are my coworkers at the SALVATION ARMY #iamTSC………. |
Wesley Simmons Lynnwood WA United States#IAMTSC Wesley was diagnosed at 6 mo, but started seizures at 2nd. He had intellectual delays, behavior, adhd, autism, kidney involvement, resection surgery at 7yo and is now 21. He is generally happy, empathetic and social. He will not live on his own but will be successful in some group living situation. |
Jennifer McIntosh Kenora ON CanadaDiagnosed at 3 months, has only mild episodes, has survived 20 years with a mild case. |
Larissa Agami Cancún Q.R. Méxicoshe’s 10 years old and she was diagnosticated when she was 8 months |
Guillermo Cortés Cancún Q.R. MéxicoHe is 31 years old and he was diagnosticated when he was 4 years old |
Armando . Saltillo Coah. MéxicoHe is 2 years old and he was diagnosticated when he was 8 months |
Aaron . Ciudad de México D.F. MéxicoHe is 22 years old and he was diagnosticated when he was 6 months |
Pablo Gonzalez Mérida Yuc. MéxicoHe is 21 yeasrs old and he was diagnosticated when he was 9 months |
Dana Holinka Northglenn CO United StatesEmily was diagnosed at birth because they couldn’t find a heart beat. She had about 13 rhabdomyomas but now she only has a few and no heart problems. She has many of the manifestations of TSC. She has 27 tumors in her brain, suffers from seizures daily, autistic, delayed as well as having tumors in her eyes, kidneys, jaw, hip and all of the skin manifestations! BUT she is a really goofy, loving 16 year old and her smile is contagious! |
David antonio Vazquez Jal. MéxicoHe is 11 years old and he was diagnosticated when he was 1 years old |
Andrea Benarano Jal. MéxicoShe is 21 years old and she was diagnosticated when she was 1 year with 3 months old |
José isai Dominguez Playa del Carmen Q.R. MéxicoHe is 12 years old and he was diagnosticated when he was 6 years old |
Scott Lindemann Campbell Hall NY United StatesJackie is 27 years old. She was diagnosed at 8 months after seizing from her DPT shot. Jackie loves to go to the firehouse and help out and play softball with our team. |
Jesus rafael Uicab Q Espita Yuc. MéxicoHe is 3 years old and he was diagnosticated when he was 3 months old |
Iker Palma duran Valladolid Yuc. MéxicoHe is 1 year old and he was diagnosticated when he was 7 months |
Bryan Acosta Mérida Yuc. MéxicoHe is 4 years old and he was diagnosticated when he was 6 months |
Estefany Castro dominguez Mérida Yuc. MéxicoSHe is 15 years old and she was diagnisticated when she was 3 months old |
Maria jose Ribero Actopan Hgo. MéxicoShe is 1 year old and she was diagnosticated when she was 6 months |
Angel salvador Gruimaldo Toluca de Lerdo Méx. MéxicoHe is 9 years old and he was diagnosticated when he was 0 months old |
Frida hu Gamboa Yuc. MéxicoShe is 2 years old and she was diagnosticated when she was 7 months |
Pablo Gonzalez cham Mérida Yuc. MéxicoHe is 21 years old and he was diagnosticated when he was 10 years old |
kacper patryk Polkowice Województwo dolnośląskie Polskakacperek lat 10 urodzony w 26 tyg ciązy z wieloma innymi chorobami neurologicznymi |
Hadwan Mar’ie Brunei-Muara BruneiMy son is diagnosed at two. Has tubers in his brain. Delay in speech and has learning difficulties but he is always be our hero. At 4 years old now he can sings twinkle twinkle star. Very proud of him… |
Nikolas Koob Houston TX United StatesMarlowe- diagnosed with TSC at 6 months old |
Charlotte Damario Holliston MA United StatesThis is Charlotte. She is turning 5years old in a few weeks, and is a wonderful little girl. She has tutors in her brain & eyes, and struggles with epilepsy. She is also THE inspiration for the #IAMTSC campaign. We love you so much Charlotte – XO Mommy & Daddy |
An Godrie Turnhout Vlaams Gewest BelgiëThis is our son Flor who becomes 9 in June, he was diagnosed with TSC at 8 months old. |
ROUSSEAU Guillaume Toulouse Midi-Pyrénées FranceMANON and his father with the TSC !One desease to be fought, one thousand hopes to share! Une maladie à combattre, mille espoirs à partager ! From FRANCE and all the persons concerned by TSC ! FROM ASTB : www.astb.asso.fr |
Anonymous Anonymous Brittany FranceRedoutable caractère, pleine de vie mais adorable. Epileptique depuis son plus jeune âge soignée exclusivement au régime Atkins modifi |
Ary Agami Cancún Q.R. MéxicoMalecon Americas in blue |
Ary Agami Cancún Q.R. MéxicoMexico in blue (Cancun Q.Roo) |
Ary Agami Cancún Q.R. MéxicoMexico in blue |
Ryan Groves Brighton MI United StatesRyan is a 28 year old man who loves his job, his family, his music, his movies and his two Labrador retrievers. Ryan lives with the following manifestations of TSC: brain tumors, cognitive delay, seizures, Autism, ADHD, Mania, angiofibromas, ungual fibromas, and angiomyeolipomas. He was diagnosed the week of my first birthday when he started having seizures. School was sometimes hard for him. “My mom and dad work hard to make me learn to do things for myself. My two big brothers are great!” |
SHI AIMENG 沈阳 辽宁省 中国I am a patient’s aunt • I live in Italy • patient two years old. March 2015 suddenly epilepsy, was diagnosed with TSC • We would like to know more about the disease TSC knowledge, and hope to get help! thank you very much! |