I just called the DC office and the local office. I don't think my call will help as much as your call because you are the constituent. Your Rep is Linda Sanchez, right? I thought I was also Rep Sanchez was going to support the bill too when I called around the time you recieved the message. Did you get an e-mail or a call?
I called the DC office today and left a voice msg for the Health L.A. I plan on calling back to see about getting Rep Sanchez support. I had spoken to the L.A. before and recieved the same msg as you that Rep Sanchez was signing on but do not see the sign on to suppor the bill
If you get a chance to do the same thing that would be great. It would be great to get her support. I am sure a lot has gone on and she plans to sign on but we just need to check in again.
Just dropping in to say hello and that I read your lastes blog--glad that all went well with that. And am so glad to hear that Jon has been coming out of his room to do some things with you. Enjoy and I hope it does last!! Take care! Jill
Hi Susan: Wow, it sounds like you really have your hands full! I'm looking at your casting adventures above and you really, really are busy!! I'm glad that they were able to get the seizures under control, because falling is such a huge deal. Sometimes it's hard to pick them back up too! I've dropped my poor little guy so many times because I think he's up and let him go before he's steady! I'm not too good at math, but I was in 10th grade in 1981 (although that was Sept. and your brother-in-law probably graduated in June). It was a three year school when I went there too. I don't have any sibs except a twin sister. All the best to you and your family...keep in touch,
Hi Susan: I just noticed on another comment wall that you said your husband grew up in La Crescenta. I grew up there too (and didn't get too far...now I live in Pasadena). Did he go to CV High? It's so nice to hear that your son is still able to walk at 17. Did he take steroids? My son is almost 12, but he is quickly losing ambulation. I'm going to get him a scooter before school starts. We are going to visit Dr. Wong in Sept. to see what she thinks about wheelchairs and such. He has had a few compression fractures (and he is a little heavy), so she will probably put him on a diet...he will HATE that!!! Take care,
This site has been such an inspiration to me- partly in recognition of where we have been but, also the strength I am able to gain from the newer families starting their journeys.
I am a lucky Mom!- The lessons I have been able to learn and the emotions I have realized is amazing... DMD is a gift in many ways- difficult to describe but many understand...
Hope we can get to know one another-
Hey Susan - I am so encouraged to read that your son was able to walk after a broken leg. My 12 year old (he was fully ambulatory before!) broke his tib/fib the evening before Mother's Day. He gets his cast off on July 3. Has has stood a lot, but has not taken any steps yet...how much therapy after the broken leg did he do?
I am sooo glad you wrote--I was going to send you a msg. today but didn't want to be a pest, so thought I'd wait!! (Next time, I'll just write you anyway;) I am so happy to hear that all is going well--these things are so critical for our boys. You are blessed to have him and vice versa! I'll check in later. Jill
Susan: I am totally new to this board and have just begun reading through the comments. I noticed your son. Diagnosed at age 9. Is it Duchenne MD? What lead you to get his diagnosis, ie symptoms? My son is 8.5 and was just diagnosed with very mild Duchenne or Becker. Can you, in lay terms, explain the differences to me? Do both not produce the dystrophin (sp?) and Becker is just more slowly progressing? Dod you ever or is your son on steroids? What kind? DId you get a muscle biopsy - if so, for what reason? I am only just starting to build my knowledge base as I really knew nothing before.
Thanks so much,