Muscular Dystrophy

[kjmommie]

I posted this same question over on the community board but someone mentioned that I should look around here as well. My son, 4, was just diagnosied with Duchenne Muscular Dystrophy. Is there anyone here who has the same diagnosis for their child(ren)?

THanks,
Kristi

 

[MSSANDRA]

Our son friend's has this particular disorder. He is wonderful, delightful 15 year old. Prayers for your family.

 

[mortman05]

I have 2 sons with DMD. You will want to go to Parentprojectmd.org for a great community of families dealing with this disease.
My prayers are with you.

 

[maroo]

I posted this same question over on the community board but someone mentioned that I should look around here as well. My son, 4, was just diagnosied with Duchenne Muscular Dystrophy. Is there anyone here who has the same diagnosis for their child(ren)?

THanks,
Kristi

I believe your child would also qualify for a wish trip.

Lauren's dear friend has MD (not sure what type) and they chose to go on her wish trip when she was younger because they generally get worse as they get older and they wanted her to enjoy the trip as much as possible.

I have worked with several kids/adults with MD through a power wheelchair soccer team we had and they have done really well - two of them are getting their masters degree and one is younger, doing great in school and they are all really great, happy kids.

You might also want to look into going to camp during the summer - that is one of their favorite things - since they get to go to camp with other kids that deal with the same things they do.

Hang in there...

 

[MAJ RN]

My 12 year old son has DMD. Like another suggested Parent Project MD is a great website for information and support. If you have any questions feel free to send me a message and I will answer them the best that I can or give you information on sites. Prayers for your family.


Melissa

 

[bouncycat]

Good luck!! We had a neighbor who had a son with DMD, and he just passed away last year at age 17. He had a full life, and alot of good trips. Yes, they should qualify for a wish trip. There is MD in my family, I have it, and my son has it, but we have a different type, called FSH. I am in a wc at disney, and other parks as I can't walk too far, my son has it, but hasn't started to show signs of muscle deterioration as of yet. Look into the wish trip, and also on the MDA website, there's a pretty good community over there as well. Let him have as much fun as possible while he can enjoy it the best. Good luck to you, and keep us posted!!