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Just wanted to say thanks very much for your kind words and support it really a means alot.
I got to this group by coincidence since I happen to be in Disney with no medicine for my son and getting crazy!! I admire you energy and drive. Congratulations!!
Well, you may have seen my post to see if anyone can help me with a solution to get Deflazacort/Calcort borrowed or Purchased. If you know of anyone, please let me know.
God bless your energy, passion and your son.
Here is my phone incas eyou hace any ideas. Thx!
I just noticed your license plate. I live in Plantation, Florida and my plate is
Hopefully both our wishes will be a reality - god willing.
Hope your little guy is doing well. Mine is Alex, age 13 and is doing really well.
How have you and family been? sorry I havent written in so long :0
My grandson is 20 months old. I am doing a lot of research on different companies that are working on a cure. Myomics is testing various compounds to come up with a cocktail that will strengthen muscles to give us all more time.
Just wondered if you guys went ahead with a muscle biopsy or not?
How interesting that you used to live in Michigan and now teach school in Jacksonville. My wife, Danelle, and I lived on the north side of Jacksonville from '96-'99 and have now moved back up to Michigan. The warm weather in FL sure is nice!
Thanks for welcoming me to PPMD. Danelle is on every day and keeps me udated, but there are times when I just want to keep up on stuff myself:) We are starting steroids next week because we have seen such a dramatic decrease in Matt's strength over the past few months. We are praying that this will give him extended strength and encouragement and keep him from falling as much.
God bless, and keep praying for a cure!
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