Duchenne Muscular Dystrophy

[iloveelias]

I have a eight year old son that was diagnosed with Duchenne Muscular Dystrophy a year ago. Just wondering if anybody here has a son who has this condition.

 

[KirstenB]

I'm sorry, I don't have a son with your son's condition. But I just wanted to share that 30 yrs ago, I was a voluntteer at Camp Manito in Wilmington De, and my camper, Leon had Duchenne's. He taught me so much!!! We always shared our lunches, and he got me to try Sweet Potato Pie (delish!). I think of him often. Being around him was a privelege I cherish to this day. He taught me so much, no doubt like your son.

I hope someone with your experience will share with you, but I just had to jump in.

 

[eternaldisneyfan]

I have a severe form of Muscular Dystrophy. I can offer suggestions and coping strategies and give you an idea of what to expect...

What are his current limitations? (I stopped walking by age 9)

Does he have any specialists? (should have neurologist, pulmonologist, evaluated by an orthopedist for scoliosis and cardiologist to check for heart involvement)

Is he registered with MDA?

Has he shown evidence of a learning disability?

All diseases progress at different rates. I know several guys with DMD that are alive and flourishing in their 30s...

Getting proper accommodations in school will be vital. I have a lot of experience in this area since I had to fight for a lot.

I would be glad to answer any questions you have. I know someone that has a website of their son who is 9 with DMD. You can e-mail me for that information ldspeaker85@hotmail.com

--Christamae
(electric wheelchair, severe contractures, trach and part time vent user, 24 hour tube fed via GJ tube, heart arrythmia, spinal seizures, corrected scoliosis---religious, compassionate, amiable, determined, and spunky, graduated high school with honors, national speech competitor, voracious reader, poet, Disney lover and pin trader--21 yrs old)

 

[JulieWent]

iloveelias,

Our family has dealt with Duchenne's for as many generations as we can trace. My father's brother had it, and my dear cousin as well. My cousin was diagnosed at a very young age (4, I think) and benefitted greatly from his affiliation with MDA. He also took advantage of all the services that eternaldisneyfan spoke of and enjoyed a prosperous, fulfilling life. He graduated from law school when he was 21 and practiced in business for 15 years after that. I thought that might be something you needed to hear right now. It sounds like something that eternaldisneyfan can confirm for you further.

Chris, my cousin, loved Disney World, too.

Blessings to you and your son and family,

Julie