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terri ellsworth
  • Female
  • Coraopolis, PA
  • United States
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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


terri ellsworth's Page

Latest Activity

terri ellsworth posted a photo

Photo uploaded on September 29, 2012

Billy with RMU cheerleaders CTC game Pittsburgh
Sep 29, 2012
terri ellsworth posted photos
Jul 7, 2012
terri ellsworth replied to danielle's discussion school
"Billy, age 11, is in public school and we haven't had too many serious issues with taunting etc.....our district does have a rigorous anti-bully policy and bullying is not tolerated at all.  On occasion when taunting or bullying has…"
Jun 6, 2012
terri ellsworth replied to Tang Thao's discussion middle school
"Hi Tang, My son Billy, age 11 1/2 today, is finishing 5th grade this week....he transitioned from elementary to middle school this year.  We have also been getting a 2nd set of textbooks to keep at home....Billy is still walking but has been…"
Jun 6, 2012
Andrea Cleary left a comment for terri ellsworth
"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,…"
Jul 12, 2011
terri ellsworth posted a discussion

Heel Cord Lengthening Surgery

My son Billy, recently age 9, is a toe walker for approx. 3 years now.  He is doing quite well--yesterday had his cast removed from arm from a recent fall...very minor fracture...the orthopedic surgeon could not believe he was a Duchenne boy (deletion exon 52) and commented that he looked "spectacular" when he first saw him 3 weeks ago for initial appt.  We talked a bit yesterday at cast removal appt. and I inquired of his knowledge with Duchenne..turns out he had a cousin with Duchenne... so…See More
Mar 23, 2010
terri ellsworth joined PPMD's group
Feb 16, 2010
terri ellsworth joined Paul Johnson's group

Families in Pennsylvania

Group where families in the Pennsylvania or sorrounding area can colloborate
Feb 15, 2010
terri ellsworth is now a member of PPMD Community
Apr 26, 2009

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:
Age(s) of child(ren)/individual(s) with Duchenne:
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.


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.


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