Daniel Ellis
  • Male
  • Brighton
  • United Kingdom
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Daniel Ellis's Page

Profile Information

About my family:
Married with four children, current ages 10, 8, 6 and 4.
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Brighton

Comment Wall (4 comments)

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At 4:06pm on December 17, 2013, Frankie Butler said…
Thank-you for replying, it's so nice to hear from you. I'm glad to hear that Arthur is doing well and is happy at school. We've actually just received Dash's diagnosis (they had us go in there for it and insisted they couldn't tell us on the phone) and he has "deletion of exon 30, consistent with Becker MD diagnosis". I guess this is relative good news for him and for us. It's still somewhat of an adjustment although not quite as much as Duchenne obviously. I still feel incredibly shaken up and moved towards action by everything I've read about Duchenne though. It has been educating. I fully intend to do something for the cause in the near future, regardless of the severity of my own child - it's shocking how little people know about the disorder (I was one of them) and it would be good to raise awareness as well as funds. At this point we don't know how things are going to unfold for Dash. Our consultant told us that any successful therapy developed for Duchenne could effectively help those with Becker as well, so we're all rooting for the same cause here. Does Arthur have any friends with MD? If at any time you'd like to branch out and connect him with another kid, like Dash - who might be a bit more mobile but might "get it" a bit more than other kids - that'd be pretty cool. Dash gets tired really quick and his legs get sore. My kids are actually American and have accents and everything, although Dash has lost his quite a bit. Sophia has hung onto hers and her friends tell her she sounds like a movie star :)

We are just down the road here in boring Bexhill!!

Take care,

Frankie x
At 6:59pm on December 3, 2013, Frankie Butler said…

Hello, I'm Frankie, mum of Dash, who just turned 5 and is being tested right now at GOSH. They're saying they think it's Becker, but I wonder if they say that to all parents during the testing process.. this is a difficult time, waiting around. I'm sure you can relate. I see you haven't been active on here since 2011 (or at least that's how it appears, not sure if that's right!) but I wanted to say hello. I'm wondering how your son is doing and how old he is. Do get in touch if you want. I'm in Bexhill. -Frankie

At 9:06am on July 16, 2011, anne said…
Just dropping a note to say hi Daniel : )
I'm not far from you in the uk, Chichester west Sussex
contact me any time : )
At 7:07am on June 28, 2011, Clare Harper said…

Hey Daniel,

not sure if this all new to you ,but sorry you had to join....

you will find great support here,i find it a salve for my worries.I am not in England but Northern Ireland and flit between this site and the UK site Action Duchenne.You might get in touch with the regional developer for your area with Action Duchenne and they can put you in touch with people who are local to you.

Clare

 
 
 

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