We are the Mischke's. A family of 5. 6 if you count our dog bear. We live in a small town outside of Kalispell called Bigfork, Montana. Our lives changed in the month of July 2008, when we decided our son Tyler (who is 5) wasn't where he should be physically, compared to other childeren. He wasn't running, unable to cimb stairs or ride a bike, and got off the floor really slow. We took him to his pediatrician and didn't agree with him needing an mri for his brain waves. So we had a second opinion at an orthopedic clinic that was offering a free evaluation. They sponsored Tyler to Shriners Hospital in Spokane, WA. That is where we learned he has DMD. Since than we have been researching, crying, and asking why. Now we don't worry about the why, just the how. How can we make him more comfortable? How can we keep him happy, healthy, and mobile?
Comment Wall (10 comments)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
My son Eric has Duchenne he is 14 years old He got this surgery done at 11. It's painful they need to be in cast after surgery about 6 weeks.You will need support from friends and family. Eric was not mobile when he had surgery. It would help your son becouse it would make it easy to put on shoes and he would have more balance.
-Brenna
-Brenna
Char Burke
Kevin, Clarita, Maureen and Martin. The family moved to Missoula in the early 1970's..so your sister in law may not know them.
If you just found out - in July - I am really, really sorry. It takes time to adapt to the DMD. I would be glad to share all the things we do for Will. My home email is charlatte2@comcast.net and cell is 206-953-2243. I work from M-F leaving at 7am and not back until 6pm with commute. You can call in evenings after Will has gone to bed at 8:30 west coast time.
Hang in there....I would take another person to your apts. for your son and they can take him out of them and you can stay and talk with doctor. We decided to go with deflazacort (steroid) to buy him more time. It's not supposed to have as many side effects as Prednisone. I think Children's in Seattle prescribes it now. We live right down the street from them. Will actually goes to Dr. Wong in Cincinnati b/c we feel they are more progressive. Anyway, I am glad you found PPMD.....I will leave you with this - there are alot of things in the pipeline now - exon skipping, uptropin upregulation, mini dystrophin transfers, etc. Bottomline - have faith and hope.
Char
To be continued,
Char
I am not aware of any groups in MT. but maybe MDA would have something you could join...maybe ask the Missoula office. Also try and use this web site and there is another web site called Trail Serve.org that has good info. Our home email is charlatte2@comcast.net and I can email you my home phone if you want to talk. Keep the faith....we are here for one another. Char
Welcome to PPMD. I hope you find as much comfort from the people here as I have. My son Ryan was diagnosed on May 29, 2008. I know where you are, as I am still there. Just know that there are people here to support you, that have been there also. Feel free to contact me if you want to chat.
-Jennifer