Started this discussion. Last reply by Michael Piacentino Feb 21, 2013. 1 Reply 0 Favorites
Started this discussion. Last reply by lisa burke Oct 14, 2012. 2 Replies 0 Favorites
Posted on April 13, 2012 at 3:02am 0 Comments 0 Favorites
Doug might be moving into a block funded house with three other people requiring high level support. They offered it to him finally last October and at the time there was space for 2 verbal people, including himself. This is "cripple nirvana" according to Doug, the kind of house one can only dream of right in the cultural centre of town, next door to one place he volunteers. But there was always a problem, nobody to wake up to him at night. They want him to trial this house, since I shook up…
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Thanks for all the information.....waiting for an appoinment from westmead ..definitely send you my contact details...
Dont know much about dmd families in darwin.....i am blessed with a son 8yrs this month on 11th..and a sweet daughter 4 yrs. Still waiting for the blood test reports for the underlying cause of dmd ....hoping for something good in future....ready to help our community.
Hi Deb, I just moved and finaly got my internet back on-hence the delay in responding. Please feel free to get in touch with me. Thanx! Sherri Looper
It's funny because when I see Doug's eyes, they are similar to my family, so when I see his photos, it's like I know him already, it's like looking at a cousin.
I really do think we are on the verge, turning the tide on this Duchenne, but I also feel deep in my gut that my Simon will miss the boat too, despite the advances and exon skipping. His efforts will benefit the next generation, and that's okay. To know how all the families have felt "so close" since the gene was identified 25 years ago, is overwhelming to me this week. And why should I expect any different?
Let's just love all our children (and grand kids) as best and as much as we can. Spoil little Hunter rotten!
Peace to you, Deb.
What a lovely grandson you have, he's a real sweetie.
Love your family photos, thank you for sharing!
Andrea from across the pond.
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