Thanks for the welcome :) Its nice to hear that you have family here in Monson! Hopefullly we can all get together sometime. We are still adjusting to this diagnosis, But if anyone needs someone to talk to, or wants to get something going locally, like a run, bake sale, (we were thinking of having a yard sale and have all the money we make go to PPMD), or any other kind of fundraiser, please let me know. I find the busier I keep myself, the better I am at dealing with it.
Yes, Adam is an Earnhardt fan! Yes, we have been to Louden twice and don't worry they are very handicap accessible and getting into and out of the races is very smooth going and easy......you get right to the handicap parking area as long as you have the handicap plate or window sign.
Adam was lucky to have met Jr. during the VIP tent visits that the races d o for their fans, Adam. The handicap seating is right there infront of the track behind the fence. The disabled in wheelchairs are admitted for FREE and the aides that attend with him are only charged a small fee.....think when we went in 2004 I paid $65.00 for my ticket, they may have increased it by then. Not too bad of a deal!
I used to live in Newburyport Mass. as a child, and still have relatives in the surrounding area around Newburyport, and even some in New Hampshire!
I am always saying keep the boys active, and out in the public, ADA came about when Adam was a baby and they still need more work to be done in this area. Others need to see how we live and other families live with the disability in their family.
Good to know we can see both doctors. Does insurance usually cover both or only one? Thankfully we have a friend who works with insurance who can help us with the ins and outs that we'll be facing with that soon too.
Hi Michelle: I do not live in MA but an fromk there and I have a lot of family in that area. We make visits out that way about every 2 years. My family lives in the North Attleboro area. If you are any where near there maybe our families could meet. We are planning a summer 09 trip. Ben
Thank you so for your support. When things get tough, I think of all the family's out there that are counting on us to prove this works. I also htink of all my dear friends who have boys that PTC124 won't help. But I know if this is successful it will regenerate and fuel the other solutions for all the boys. By the time your son is 6, hopefully this will be a proven interventinand it will be available.
Your children are cuties. I am happy to join the group though my son is 20 and your discussions will happily be about much younger boys who will have many more treatment options. However, any questions about what P.T. worked, what didn't etc. I will be happy to help out. One thing, if you can get into an aquatherapy program especially when he is 7 or 8 ...I found it to be extremely helpful. Pat loved it. We went to a specially designed aqua therapy pool at Whittier Rehab in Westborough.
Its great the you will benefit from the very promising PTC124! My Calvin has a deletion of 45-52 so we are waiting on the exon skipping help. I also went to the Childrens conference in April. I have not yet gone to Mass General. Have they set up an MD clinic there yet? I liked the Dr that spoke from Mass General and have been contemplating a visit with Cal to see him. Currently we see Dr Darras at Children's. Who is your MD doc? And have you met any other local families with DMD?
While exploring the new PPMD site, I discovered you are also from Massachusettes. I live in Mansfield and have a 6 year old son with DMD. He was diagnosed 1 year ago. Ironically, I also have a son named Jake and one named Calvin (Calvin has DMD). I also have a daughter. If you are interested in chatting please do not hesitate to send me a note. I have not yet met any other families nearby with DMD. I hope your son Jake is doing well.