|
|
 |
|
 |
|
|
|
Curtis was born on September 17th, 2002. He was a healthy 9 pounds even and a full 2 weeks late. He was the most beautiful thing that I had ever seen. Curtis was the best baby too. He slept through the night from the beginning! Curtis was a normally developing and very happy little boy. He achieved all his milestones on time if not early. Then he started having seizures when he was 3 but we thought it was just a typical case of epilepsy. He took his medicine every day (without fighting) and still attended a regular pre-school. He loved going to school. Then earlier this year, he started having drop seizures and his speech was declining. One week he was running around with his friends at school and then the next week we couldn’t send him to school because he was falling too much. |
 |
|
|
|
We took him to AI DuPont Hospital and we were there for 3 weeks. It was during this 3 week stay that we received the most devastating news that any parent could ever think of. Our little boy has a fatal degenerative neurological disease called Battens Disease. This disease has no cure. Curtis is no longer talking and needs total support to walk. A lot of children at this stage of his disease are no longer able to bear any weight on their feet so we are thrilled that Curtis is still walking. He is no longer able to eat or drink by mouth. He gets all fluids
and nutrition by feeding tube. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and presently is always fatal. But we have learned to live in the moment. He is still a happy boy and it is our mission every day to make him laugh and smile as much as possible. He has started attending school again at Easter Seals. He is happy there and loves being around other kids. We visited his old school recently and he was so happy to see his former teachers and some of his old friends on the playground. He gave them hugs just like he did every morning when he was a student there. He loves giving hugs and he gives the best!
|
|
|

|
|