I see you live in Cooperstown (though I'm not sure which one). Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.
If so please email me at firstname.lastname@example.org so I can put you on the mailing list.
I just wanted to let you know that I still am not sure about seeing Dr. Wong. I recently spoke to a 31 yr old with Duchenne. I asked him what he thought about going to Cincinatti and did he ever see Dr. Wong. He said he did hear of her but sees Dr. Finkel at CHOP in phila. He still gets great care! I was very excited that he is doing well. So I am still thinking about it. The group I see at DuPont seem to know what is going on. When we first found out our son had this disease they quickly put him on steroids and he had all the tests that everyone seems to say Dr. Wong does. I feel so confused! Well I just wanted to let you know what I was feeling. I don't know if this really helps you?
Thanks for checking. Yes, the responses did help very much. I just found out from Jared this morning that Josh from the School District came and did his physical assessment this past week. So, the next step will be the IEP meeting. From my understanding, goals should be flexibility and keeping Jared walking as long as possible. I am curious to see what Josh will say. By the way, I don't know if I told you this before, but what a lovely family you have.
Don't know if you remember me, but we had e-mailed for awhile a few years ago. I also had a brother with Duchenne. I was looking at the posts in the Carriers group, and I thought of you and wondered if you were on PPMD Community. I remembered your first name and that you lived in PA, so I did a search on the site, and there you were! I'm glad to know that you found this site--it has been such a blessing to me. I hope it is to you, too!
Beth from CA