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Exon Deletion 3-7

Connect with other families with exon deletion 3-7.

Website: http://www.frontstep.us/Delong/mda.htm
Location: Derry, New Hampshire (You are Welcome to Visit)
Members: 29
Latest Activity: Nov 2

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Daughters of Carrier Moms

Started by Colin McKenzie. Last reply by Colin McKenzie Jun 13, 2011. 2 Replies

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Comment by Wendy Bertellotti on November 6, 2008 at 8:29pm
Hi Eileen,
Thank you so much for the information and reaching out. I feel somewhat settled to hear someone out there knows something about what we're dealing with. Although we're in a big city (San Diego), it seems no one really knows a lot about DMD. Dr. Wong is a God send. I'm glad to know you're out there too.

Jake is doing great! We would never know he has anything going on if I were'nt so crazy. When I noticed he had trouble switching feet up the stairs, I called for a referal for OT to promote coordination. We really had no idea what we were in for. Jake attends regular preschool and is keeping up with peers in all ways accept speed with running. He's such a wonderful guy!

Your boys are adorable. They inspire me. Glad to hear they are doing well. Day by day:)

Best.
Comment by Eileen DeLong on November 6, 2008 at 10:13am
Hi,
I don't know if it is that common, but I know that Dr.Wong has several that she is treating. From my reseach this group it known at the "Outliers" who seem to present more like Beckers. My boys are 12 and 9 and are still walking well. They are on Deflazacort which really has helped them alot. Also I know that researcher Steve Wilton of Austrialia has an interest in this group because they seem to have a natural exon skipping going on. How is your boy doing? How did you find out? 4 is an early diagnosis for this group. I wish I knew earlier so we could have started treatment sooner.
Comment by Wendy Bertellotti on November 3, 2008 at 4:23pm
Is this deletion one of the most common ones? We just learned of our 4-year olds diagnosis (DMD) in July. Do professionals know how this deletion is different from other genetic patterns in terms of prognosis or progression? We have another baby (1.5year) boy and haven't had the heart to test him yet.....Got a lot to learn. Best to all.
Comment by Donna Taylor on September 26, 2008 at 4:57pm
You are one step ahead of me! After that last post I started thinking how awesome it would be for us 3-7 families to have a group. Thanks so much for setting this up!!
Comment by Eileen DeLong on September 26, 2008 at 4:32pm
Hello,
I would like to reach out to all families with this deletion to share my story with. I have been aware of Duchenne MD all of my life. My mothers's brother Jack had it. He has born in 1919 and lived to be 39. Two of my mothers sisters had sons with it, Ricky and Mark, and they lived into their 40's. I am the youngest of 20 grandchildren and so far the only one affected. I have 2 boys, Calvin age12 and Jared age 9.
 

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