Some background, my younger son, Derrick is 10 years old. He has struggled the duration of his life with muscle pain and weakness. For 10+ years I sought a medical explanation for why he walked with a limp and seemed to physically become tired much faster than his peers. As a single mother I felt completely helpless and alone when my baby cried nearly all day and night. As he grew the crying increased. When he started walking it was clear to me something wasn't right yet still medical exams did not provided answers. As his verbal skills developed he used anger to express himself in his chronically tired state. He would come home from school and the YMCA everyday so extremely fatigued he could barely walk into our home.
For many years Derrick asked me for a wheelchair. It was hard to regularly tell him no. One night, I was tucking him into bed where he asked me for prosthetic legs. I responded saying, "Honey you have legs". My jaw nearly dropped when he told me that we could cut them off so he could have faster bouncier legs.
During May of 2018, I decided I was done forcing him to spend long hours at school where he was being bullied and falling behind in every subject despite his strong intellect. I had no idea how I was going to survive in San Jose, California working 1/2 my normal hours. Following my intuition, I went ahead and cut my hours at work. Life changed QUICKLY after cutting back at work. The community here has been amazing! I have found a way to work part-time, stay in my community and care for my son after school and during school when needed.
Early in 2018 we started to get clues as to what was going on. After extensive testing, in July 2018, Derrick was diagnosed with a rare form of Muscular Dystrophy called Bethlem Myopathy.
Life has also drastically improved for Derrick and I. Derrick and I are excited to say that he is HAPPY and finally has a YES to the wheel chair he has been asking for!!
He is now receiving the care he has needed for so long. Please help Derrick and I stay involved in the community.
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