Started this discussion. Last reply by Frankie Butler Dec 30, 2013. 6 Replies 0 Favorites
Wasn't sure where to post this question. My son has been newly diagnosed with Becker - in-frame deletion of exon 30 - and I can't find any info about that, or any way to further my understanding of…Continue
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Hello Frankie, Sorry for delay in responding. I had forgotten that I had signed up to this website as I haven' t had any contact from anyone.... until now. My Son is now 6 and is diagnosed with Duchenne Muscular Dystrophy. Arthur was very young when he was diagnosed so its hard to remember what the doctors where telling us before he was diagnosed, all I can say that Arthur's symptoms presented quite differently from those of your sons so fingers crossed for you guys that its not DMD.
Horrible process to go through, Arthur's care is through The Evelina at St Thomas's London and again the way they handled the diagnosis and follow up treatment has been disappointing. How long do you have to wait to be seen?? I remember that when I got the call from the Dr. I insisted that he told me the diagnosis over the phone rather than waiting for the appointment in London- This gave us a chance to think of questions and compose ourselves.
I should add that Arthur is an extremely happy little boy, he is doing well at school and is coping well generally.
We are more than happy to chat further and might be able to give a little guidance on various systems etc...
All the best.
Dan and Alissa
Oh, and one for yourself of course! Single mom's rock!
Welcome Frankie,
Though I wish none of us had to deal with this, it is what it is. I hope the wait for the results is bearable, as somehow the waiting is worse than the knowing. Give Dash and Sophia an extra hug from us here in Canada :-)