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Россия Магнитогорск, Челябинская обл. I love my papa, he besides me here, he always accompney with me to fight with the monster of TSC every day. He loves swimming and bbqing with his family. He has been seizure free for 2 years. At 22 months he started having seizures. His TSC has affected his brain kidney skin and face. He was diagnosed with TSC at the age of 6 months and has been seizure free for 5 years. 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. 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. 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!! When Alex was born there was no genetic test for TSC. When he was 16 months old he had a radical right hemispherectomy for uncontrollable seizures.
He was seizure free for 15 years. 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. 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. They both suffer from epilepsy, brain, eye, and skin involvement.
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. Lived and battled with tsc for 32 yrs.. He can not write but enjoys painting very much. He can not communicate with others but is always smiling. I just hope he is happy every day without pain. 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. He is 15, and about to graduate from 8th grade. 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! 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. Speech delay and intelectual delay. Sebastian is loving,funny,love music. Rossy is a sweet italian child! We love her with all our heart!!! He is affected by his brain face kidney and skin. He still has seizures. He turned 5 in January and loves Curious George! He is a very happy little boy who always wakes up giggling! Nothing can or will keep her down. 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! She developed normally with seizure control. 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 Her kidneys began to fail at She got a new kidney in She is a survivor, my HERO.
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!!!
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