Jeffery is now 18 years old. He was diagnosed at 71/2 years old. His deletion is 45-54. He has been on Deflazacort since he was 81/2 years old. Everyday we hope and pray for a cure. He has had a power chair sine he was 9 years old. He has had many lower leg fractures and has had compression fractures in his spine. We started out seeing Dr. Mendell. We saw Dr. Wong in 2007. He is a senior this year. He still can walk with assistance and can stand for short periods of time. I am so glad this site is available. As parents I believe having this great support system is crucial. Jeffery is an only child. Socialization is very difficult. He has friends at school, but teenage guys don't realize how lonely he is. It hurts to think that they don't realize what it would mean if they just took 5 minutes out of their to stop and visit. I have talked with them, their parents, & even at school. They have a peer support group at school, for the past 2 years. But they haven't planned anytime to spend outside of school. We do have an assessible van and they all know I can take him anywhere. We've attended football games and he has gone to the dances. It breaks my heart to feel that kids these days are too busy to be kind. We have sponsored Duchenne awareness week at school and attended U of Michigan football game for Coaches to Cure.
Jeffery attend MDA camp for 2 years. the 2nd year he fell and refractured his left lower leg. I feel it was a positive axperience for him to be involved with other guys with Duchenne. He always looks at me and says,
" I just want to be treated as a normal guy. I'm a normal teen with the same feelings and needs, but I use a wheelchair." "I'm not a freak." I'm hoping college will prove to be a better experience for him.
He has a wonderful smile and a great positive attitude. We thank God evreyday for that. I quit my job 2 years ago so that I could be here for him. I worked for 32 years, so it has been an adjustment for me. His dad has been working out of town this year, he is a union pipefitter plumber. Work has been difficult to find in Michigan.