How is Kyle? He has Beckers correct? Have you noticed much change and did they decide to give steroids? My son
is doing well so far. He will be 7 in Feb. I think he got started on the meds at the right time. He is doing well in school. which makes it easier since we have to run to OT/PT a few times a week. Just wanted to check in from PA.
My husband and I actually met at U of M, we lived in Ann Arbor/Ypsi area until 5 years ago when we moved to Minnesota. We are both still Wolverines at heart, just stuck in gopherland. It is a home game, it's the U of M/MSU game, should be good. We considered driving home for it, but we will just be coming home from a trip to California on October 18th and it would just be to much traveling.
I find the amount of DMD/BMD families in Michigan to be amazing, my parents are in Kalamazoo and my in-laws are in Traverse City for half the year. We miss Michigan, but have found fantastic care here (very experienced PT that was actually the one that recognized DMD in Xavier) and a great school system so I don't see us moving back anytime soon.
Next time we make it home though to visit we should definately connect!
Thanks for keeping us informed on the bill. I am real busy at work and with some things at home so your posts help me to stay informed. I was able to call DC last week to get support from some offices. I believe the House and Senate will pass the bill. We just have to stay active in pushing.
I have to run but my friend Adele will be attending meetings n DC tomorrow....Pelosi is one of the offices and I plan on e-mailing my brother in-laws letter tonight. She needs it by 11am DC time...her e-mail is:
Thought you might want to write a letter w/your son's picture as a reminder of your conversation with her.
California just got another sign on for the House! One of the southern California parents made a trip to see her Rep today and met in person. He told her he thought he had signed on and would do so as soon as they come back from recess!
Just had to share the good news!
I plan on following up with Pelosi and another House member to try push them for signing on.
Have you heard any more on Pelosi about her support?
I am Sue Mahlock, and I work for PPMD at the Executive Office. I have been volunteering or working for them for most of the past 12 years since my son, Billy's diagnosis. We found out when he was about 11-12 that he had Becker and not Duchenne. He is doing very well and is turning 19 next week. He is going to be a sophomore in college and I am blessed to say he even marches in the band! I don't know how he does it as he never could ride a bike or play sports but we are very very grateful for how well he is doing......it is hard to find other Becker parents out there so feel free to phone or write any time.....513-424-0696(office)
Best to your family,