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terri ellsworth
  • Female
  • Coraopolis, PA
  • United States
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  • Andrea Cleary
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terri ellsworth's Discussions

Heel Cord Lengthening Surgery

Started this discussion. Last reply by terri ellsworth Mar 24, 2010. 4 Replies

 

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Profile Information

About me:
I have one child, Billy, age 9, who was diagnosed at age 4 1/4. He has deletion of Exon 52. We are from the Pittsburgh area. I am a kitchen and bath designer for the past 18 years and have been in the interior design field for 32 years. I enjoy what I do and we also enjoy the outdoors.
About my family:
Billy is a very bright, curious, adventurous, active, fun, and funny child. He loves playing with his cars, car cruises in the summertime, hiking, Wii, DS, and looking at books. He wanted a sibling, but instead, we got him a beagle named B.B. (Billy's Beagle)
Name(s) of child(ren)/individual(s) with Duchenne:
billy
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
coraopolis, pa

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At 8:18am on July 12, 2011, Andrea Cleary said…

Hello Terri,

Unfortunately, that was not me at the conference (stuck here doing minor house renos).

I did get to listen to some by live feed while I varnished furniture outside.

But the same does hold true for the trial we will be taking part in, the GSK exon51 skip; I will answer any questions anyone has. We don't start until late Aug or Sept though.

Simon turns 11 this coming Saturday but is going off to Scout camp with brother and Dad. One week for mommy to relax!

Take care Terri.

Andrea

At 2:17pm on February 15, 2010, jenn said…
hey terri, it is interesting that kids with the same deletion seem to have other things in common as well. your nine year old, how is he physically, we have an 1 yr old in a chair that seems to have followed the normal progression of dmd and an 8 yr old with almost no symptoms in gross motor issues, but has lots of fine motor delays, and speech delays. i find it strange how different the two boys can be with the same deletion too...
At 8:44pm on April 26, 2009, Jacobs Mommom said…
Hi Terri:

I'm not sure where Coraopolis is in regards to Doylestown, PA but please join the Group for PA Members so that we can all stay in touch. I am planning a fundraiser for October and if you are anywhere near Quakertown you are welcome to help us if you want to.

Donna
 
 
 

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