Jason is a 10 year old boy who was born on September 3, 2009. When Jason was 2 years old he initially received a diagnosis of ASD and ADHD. When he was 7 years old, he was diagnosed with MECP2 Duplication Syndrome. We have taken him to several different specialist in our area to try and get a better understanding of what this disorder is and what it means for his future. And the Drs cannot give us much more information about what MDS is other than what is already out there or even a glimpse of what the future holds for him.
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, 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.
Jason is an amazing child who fights this battle every day. 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! However, we were not sure what his future will hold for him because there is a possibility for regression.
In June of 2019 upon his 10th birthday the regression began. Jason started having multiple seizures a day. The anticonvulsant medications he was prescribed were not slowing his seizures down. By the fall of 2019 he underwent more testing to find out why he was having so many seizures and he received a diagnosis of Lennox Gastaut syndrome. A rare form of epilepsy that unfortunately often happens with boys that have MECP2 Duplication Syndrome. In February of 2020 it was recommended by his behavioral therapist and speech therapist that Jason should have a swallow study done to determine the reason why he didn’t want to take his medications or eat on his own anymore. And he became very lethargic. By February of 2020 his health started to decline significantly and he had to have a gtube placed to help with adequate nutrition. Since then he seems to be doing somewhat better. He still suffers from seizures daily but not the frequency he was having before. No matter how hard Jason’s days are, when he looks at you he still has this smile on his face at times as if nothing was wrong. His strength is incredible. Our hope for Jason is that one day he will be cured from this debilitating disorder that impacts his everyday life.
|Joe Crews||$100.00||August 09, 2020|
|Bernard ciliberto||$25.00||August 09, 2020|
|Cathy Max||$0.00||August 09, 2020|
|Paul & Dale Abrahamson||$2,000.00||August 06, 2020|