Crissy's Story "My Brother...Constantly Smiling"

7 billion ones, randy bacon, Ataxia-telangiectasia

 

 

7 billion ones, randy bacon, Ataxia-telangiectasia

Jeremy was born in 1989, and at first it seemed he was a healthy baby boy. Unfortunately by the next morning he was being flown to Children's Mercy Hospital where he spent the first month of his life fighting to live. He had two surgeries before he was a month old one to remove a blood clot on his brain and the other to put a shunt in. He was on seizure medication for the first year.

Eventually Jeremy was diagnosed with cerebral palsy, which we all accepted. Jeremy struggled to speak so he learned sign language. However, when his baby brother Scott started talking Jeremy did as well,  and he hasn’t struggled to say exactly what he thinks since then. Jeremy was able to walk and run just like any other child until elementary when he started having to use a walker and by high school Jeremy was in a wheelchair.

Our mother knew that with cerebral palsy you do not get worse and she started questioning doctors about what was wrong with her son, and finally one doctor knew. The doctor was so excited when he saw my brother that he forgot he was a persona, he had only seen this disease in a textbook.  At the age of 12 Jeremy was diagnosed with  Ataxia-telangiectasia (A-T), which is a disease that has no known cure. A-T is a rare genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a high rate of cancer. There are treatments to alleviate some of the symptoms of A-T but basically it’s a death sentence due to the lack of research.

When Jeremy was diagnosed with Ataxia-telangiectasia (A-T), the average life expectancy was age 17. As you can see he has surpassed that age, so every minute we have with him is a blessing. Jeremy has always known what A-T entails and there are days when his arms shake so bad when he is trying to eat that he exclaims, "I hate A-T!" Then there are days when he is with his A-T family and he says that he has been lucky to do all the things he has done and met all the wonderful loving people because of his disease.

7 billion ones, randy bacon, Ataxia-telangiectasia

Jeremy has done adaptive surfing in Costa Rica, we did the Disney 5k this year, and we have been doing the Dallas Bubble Run which supports AT for the past two years. As a family we push Jeremy through the 5k and he crosses the finish line just like everyone else. Next up is a 10k and hopefully further. Last year Jeremy met another girl with A-T that happened to live very close and they have recently started dating. Jeremy says, "They can make wheelchair sparks!"

7 billion ones, randy bacon, Ataxia-telangiectasia

Jeremy has always been an inspiration to everyone he meets and he is constantly smiling and has a kind word for everyone.. In high school his class created the Sunshine Award and presented it to him at the awards ceremony and he was voted prom king for his senior prom. He rolled out of the Prom with a crown bigger than his head. Jeremy has always been a beacon of light and his smile and laugh are contagious.