Clare Harper
  • Female
  • Tyrone
  • Ireland
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Clare Harper's Page

Profile Information

About me:
Married working mum of 2,
About my family:
two children ,Faith aged 10 ,Lewis aged 5. Lewis diagnosed last July
Name(s) of child(ren)/individual(s) with Duchenne:
Lewis
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Tyrone

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Comment Wall (15 comments)

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At 7:40pm on May 3, 2013, kimmy watters said…

 hi  clare  my name is kimmy watters how are you doing i have friend who has dmd.kimmy watters

At 10:06am on September 1, 2011, Donna said…
honestly, we haven't noticed much of anything.  He was pretty mild/just diagnosed when we started it all.  Really the only thing he was doing was the tippie toes and I honestly don't know if that resolved because of the steriods, braces, or ptc124 or a combination of all.  We were told in the beginning we might not really notice much change because of where he was at with progression.  BUT, if it slows it/stops it, then I would be thrilled.
At 7:08pm on August 28, 2011, Angela Bourgeois said…

Clare,

 

You might want to check out this link:  http://clinicaltrials.gov/archive/NCT01247207/2011_08_16/changes which shows the changes in the PTC study.  No defined end date now :). 

 

Angela

At 5:42pm on August 24, 2011, Linda Woytus said…

Wonderful!!

 

At 1:08pm on August 17, 2011, damien lynch said…

Hi there Clare,

My name is Damien Lynch. I live in Tipperary, Ireland. Our son Dylan is 6 years old and was diagnosed two years ago. I'm really interested in some of your comments on Idebenone!! It sounds great. Is it expensive to ship to Ireland? Interested in giving it a go. Dylan is on steroids and vitamin D supplements.

 

Regards,

Damien Lynch

At 2:02pm on August 7, 2011, Angela Bourgeois said…

Hi Clare,

 

Jacob has been on the Ataluren since June 3rd.  Things are going well and seem to be about the same as before.

 

Angela

At 9:18am on July 19, 2011, paula steele said…
hiya clare...dylan is on 15mg of prednesol daily and calcichew tablet...takes them dissolved in a little water and juice and takes them grand thank god.. have noticed him having lot of temper tantrums now for the past few days and we were advised that this might happen...but to see dylan being so angry and frustrated is heartbreaking especially as he was so placid and good humoured before he started on the  meds...have also been advised by occupational therapist and physiotherapist to look into getting wheelchair for days out or long journeys etc for when he gets tired so have to physche myself up for that now...hows things ur end?
At 9:51am on July 18, 2011, paula steele said…
hiya clare...yeah it was really interesting to see the different levels of duchennes in dublin at the skin biopsies last week...but did you notice anything else? i found all the boys who were both in and out of the wheelchairs seemend so happy and content in themselves...i thought that i was the only one that noticed that but another mother said it to me also...dylan doing ok at the minute...has just had his muscle biopsy and is currently on steoroids...is having terrible mood swings though as result of the steroids...hows lewis doing and how you doing yourself?
At 1:21pm on July 17, 2011, paula steele said…
hi clare hows things? my son dylan had the skin biopsy last week too in dublin...
At 3:11am on July 7, 2011, lisa kirby said…
hi clare thanks for your comments. I have not joined action duchenne but i will do like you say it is so overwhelming with the appointments etc that you dont seem to have time for anything else very difficult times but at least i am having some good days so that is good. Yes the resesrch and trial seem to be going well so that is exciting.x
 
 
 

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