- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Special Needs
Noix
member
duchenne/beckers moms??
Noix
member
Are there any duchenne moms here?? My 2 sons just got diagnosed with duchenne they are almost 3 and almost 2 years old.
This discussion has been closed.
Re: duchenne/beckers moms??
Not a DMD/BMD mom, but I was a camp counselor at an MDA camp for kids with MD for 8 years (and my brother also was a camp counselor--now he is a medical resident planning to go into pediatric neurology). My best advice would be to get hooked up with your local MDA office, and start letting your kids go to MDA summer camps when they turn 6. Our state "camp family" (the campers, campers' families and the counselors) is extremely close-knit, and we all really do share the highs and lows together. There are several siblings who share the same diagnosis in our camp group, and your little guys might find some great playmates who can have tons of fun together (and also deal with any "tough" issues together when they arise).
Lots of hugs--I can't imagine what you are going through emotionally since the diagnosis. But one of my good friends has DMD, and it is amazing how many treatment "breakthroughs" they have made in the 30 years since he was diagnosed--and how many more are on the horizon.
Thank you but we do not live in USA i live in iceland and here there are only 11 boys ( including mine) with this disease. And there is no such thing as summer camp or anything
I do hope that they will get the change to go to summer camp when they are older and will speak english, but i dont even know if that is a possibility if you dont live in the usa..