Hi Pilar, I just am back on the PPMD site lately and see your post. We should talk. We leave for Cincinnati on Nov. 1 and get back Nov. 5. maybe we could talk after or one time next week. But next week I do have a lot to do and at least three appts. so how about after Cinncy. I'm sorry I never called you. my cell is 201-982-3144. I'll try to call you as well. it's been a rough year for Kevin and he is too tight to walk and it's just so difficult. He's a great kid with a great attitude. Have a good weekend. Patti
Did we meet a few years back at an MDA "support" meeting -- I use that term loosely because those meetings were such a waste. But I met a Pilar there at least 4 years ago. You've found PPMD and that is wonderful. We have a great NJ group too -- NJ FACES. we get together every other month for meetings and we have some annual parties. It's really great having eachother. Go to NJFACES on this site and sign in too.
Kevin is 10 and doing pretty good -- just the same as your Sebastian. In fact, we are contracting for a one-level home in our town. I live in Bergen County. If you are the same Pilar you aren't far from me. Kevin has a piece of DNA missing on exxon 20 and it is called a frameshift deletion -- sounds similar to your results. so much to talk about. Kevin switched to deflazacort two years ago due to weight gain. Takes it every day! along with many other supplements. Send me an e-mail on my e-mail at firstname.lastname@example.org and we can exchange ph. numbers. Would love to talk to you. regards, Patti