Jason is a 9 year old boy who was born on September 3, 2009. Jason initially received a diagnosis of ASD and ADHD when he was 2 years old. When he was 7 years old, he was diagnosed with MECP2 Duplication Syndrome. We have taken him to several different specialists in our area to find out what this disorder actually is and to make sure we are doing as much as possible to help him get stronger.
He has been receiving intensive therapy since he was 8 months old due to the delays he has from this disorder. At 18 months old, he started walking. His walking is still unsteady at times due to the spasticity that he has in his hips and his legs. He is also non-verbal.
When Jason was 7 years old, his sister was born. She is not affected by MECP2, and she has helped him develop and grow so much more than what we had anticipated. When he turned 9 years old, he started to feed himself independently, because he was imitating her during meal times. She has helped him progress in his social skills as well. Before she was born, Jason would always sit by himself at school. But now, now he is very social and probably the most popular kid in his class. I never imagined that would be possible due to him being non-verbal.
However, Jason is a very tough young boy who fights every day to overcome all the challenging obstacles this syndrome presents. He is a very smart, happy, energetic and full-of-life little guy. He never gives up. He is a fighter. And he continues to make progress daily!!! Jason has a smile that will melt anyone’s heart that meets him. However, we are not sure what his future will hold for him because there is a possibility for regression. Our hope for Jason is that one day he will be cured from this debilitating disorder that impacts his everyday life.
Please help support the 401 project to help us find a cure for Jason.