Jacob is my boyfriends son he is 12. He is in a power chair that we just got him in Nov. His mom hasn't been in his life for 2 years and we cant find her. I home school him because the Oklahoma City schools aren't that good. His dad works full time and I take care of Jacob and my two kids. I am trying to find a support group in our area. Jacob is progressing a lot faster then most and we don't know how much more we can do for him. We are open for any thoughts or comments. 

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You could try contacting your local mda office and check with them.  We live in Nj and they have not started one in my area yet.  They did offer to get my phone number so they could find another parent to keep in touch with, but I was not interesed in that.  I use this website when i need help with any question. My son will be 14 and has been in a powerchair for 2 yrs.  I don't know if this helped but I sure know what you are going through.

      Thank you.  I will try that.

 

Are you on Facebook? There tons of Duchenne parents on there.

my son is 7 and he is progressing at an extremely fast rate as well. Except instead of the muscles breaking down really fast we have heart and liver issues. I have found a lot of help with our mda.

is there a particular group to join on fb?


 
Laurie Paschal said:

Are you on Facebook? There tons of Duchenne parents on there.

Alot of families have Misty VanderWeele as friends.  Misty just lost her son recently and is a strong advocate and has books published on Duchennes.

 

There are quite a few groups, but also just by friending other parents, your network will quickly grow and you'll see what conversations are going on. I'm on there as Laurie Carroll Paschal. Find me and I can also send you friend suggestions as well as add you to some of the groups I'm in.

thanks everyone:)

 

You guys have all been very helpful. thank you guys.

Hi Amanda : -)   We are in Edmond, OK and have a 14 year old with Duchenne's who is much more progressed than most other kids his age with the same disease, so I totally get your concerns.  I home schooled for 12 years but presently Travis and his two brothers do attend public school here and Travis has a full time aide.  My cell is 405-227-3718 and you are welcome to call me "anytime".  I would love to talk with you about what your options might be and how putting your boyfriends son back in school might be a good choice, especially as this disease progresses ..... we just really need to talk!!  I am sure I can help you quite a bit.  I am also on Facebook  ..... Jane Gallimore Davis  

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