Frankie Butler's Blog (4)

Ups and downs..

Sometimes it feels as though nothing is wrong, at all. And that's what's the most baffling - my son is racing around, playing with friends, running like the clappers, full of energy.. you'd just never think he had a muscle disorder going on in the background. And then he flops on the couch and looks absolutely knackered, and there it is - the little reminders. I guess it'll be this way for a while. But who knows? 2014 really requires a new mindset: one day at a time. Easy to write it here..…

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Added by Frankie Butler on December 30, 2013 at 6:21pm — No Comments

Razor E100

Thanks to all y'all on here, I bought Dash a Razor electric scooter for Christmas this year - it's awesome! I might have to get a grown-up one for myself

Added by Frankie Butler on December 24, 2013 at 9:24am — No Comments

Exon 30

We now have a diagnosis: Dash has an in-frame deletion of exon 30 and this is "consistent with Becker diagnosis".

This is relative good news for us and him, I suppose - not great, but not Duchenne. It's interesting, because although this means he is luckier than some, I was right there and ready to be told that it was Duchenne - and that feeling hasn't really GONE anywhere. I still feel furious at the injustice of it all, desperate to do something. Whether my own child is…

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Added by Frankie Butler on December 18, 2013 at 1:41am — 1 Comment

Waiting

We got a letter today from GOSH telling us that they are also testing for FSHD and Limb Girdle. That's a lot of tests... still so baffled here, and dying to know what we're up against. But also not wanting to know, because it might be bad news for Dash. It's hard to look at his sweet smiling face each day and listen to him laugh.. today his sister got travel sick and threw up in a packed lunch box that still contained a sandwich. Dash thought this was the funniest thing he'd ever seen -…

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Added by Frankie Butler on December 4, 2013 at 4:00pm — No Comments

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