I just wanted to get the word to you and Joel that I believe I made contact with your House member's Merced office to request a sign on for the PPMD letter we are circulating with the House members. My Rep, Doris Matsui is co-sponsoring the letter and can be contacted by your member to sign on. If your member is Dennis Cardoza please call tomorrow and let Stacie in the Merced office know you wish to have his support on this important letter. Stacie can be reached at 209 383 4455. I sent an e-mail to a friend at work who forwarded my e-mail to Stacie. The more calls the better and most likely he will sign. We only have until this Friday, 4/17 for final signatures.
I will let Joel know and I will forward my e-mail to the @tds.net e-mail.
Ruth, it's odd but this was such a big deal for our family! We still have a stroller but our 8 year old wouldn't let anyone see him in it once he got to 2nd grade. But until then our MacLaren Techno worked great! Their standard umbrella strollers are built a bit on the tall side for both the kid and the adult. I know of other people who have bought a "Special Needs" stroller from MacLaren, that you might only be able to get on-line, which I think fits kids up to say 8 or so.
The real clincher for my son in getting around was getting on steroids (another saga for our family! why does everything about DMD have to be so gut-wrenching?!). He got to a point where he was falling a lot before steroids. Now he's doing great. And we have an order in for a Power scooter and he's really excited to get it ("it's fast" he said). So we're on to the next phase . . .
Here's hoping all the decisions are (relatively) easy ones for you and your family.
Wishing you health and happiness,
Hello Ruth, My name is Tracey and I just joined the PPMD community a few days ago. My son Luke was diagnosed in August 07 and I was completely devastated about it. I found out that I was a carrier and didn't know and no one in my family had this as far as I knew. I have two daughters that are 19 and 14. Luke is my only son! I do realize that this is not my fault but it has taken me a while to get that! My oldest daughter has been tested and she is not a carrier! The day they told me that I just cried because I was so happy! My younger daughter will be tested this summer and I pray that she to will not be a carrier! Luke is 7 now and doing well. How is your little guy doing? And is it hard for his two brothers? It's been hard for my girls. But we learn from Luke and live everyday to the fulliest!
Welcome to the new PPMD site. I am sorry you are here because your child has dmd.
This site is full of information and support. We can help one another and learn from each other.
My son is 16 years old with dmd.
Just a quick tip. You can apply for a medical baseline with your utility company. You request the application, they send it to you, your child's doctor signs it and you mail it in. When it is processed you are then given a medical baseline. Every little bit does help in saving money.
When you get a chance look at the advocay section under Discussion forum. We need help to get Senators and House members to support the MD Care re-authorization act. It is the one way we can help our children and have our voices heard. Both CA Senators have signed on. See if your House member supports it. If they do not, we can help you to try to secure their support. Just let us know.