Clare Harper's 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
At 5:53pm on May 29, 2011, paula steele said…
hi claire...things ok with us...all going well so far so fingers crossed it stays this way for long time....hows all with you? hows ur little boy doing? we have an appointment with genetics on 27th of this month so will ask them then bout dylans skipping etc..
At 12:02pm on April 11, 2011, Mandy Kerr said…
Thanks for the welcome Clare! It is nice to meet you. Wish it was under better circumstances. My husband has been on this site for over a year and so now I am joining.......not sure what took me this long but I am glad I joined. Some days it is fairly overwhelming thinking about things so this site should help with that.
At 8:32am on March 22, 2011, paula steele said…
hey clare to be honest i still dont know what dylans mutation is...he had a genetics bllod test back a few months ago in crumlin hospital in dublin and im still waiting on the results...really did not think that it would take this long but was on the phone to consultant last week and they said they will be in touch as soon as possible...the cutbacks going on in the health service is totally disgraceful but believe you me i will fight tooth and nail to get dylan everything he needs and deserves...am also still waiting on the muscle biopsy...has lewis had one of these done...dylan eats very well so no worries on that front...loves his spuds and vegs and meats etc..he is also very active and never once complains of tiredness etc..he is such a happy little boy and all this makes it so unreal and unfair...
At 7:15am on March 22, 2011, paula steele said…
hi clare thank you so so much for taking the time to get back to me...ive just found out about this site yesterday so still trying to find my way around it...like lewis, dylan too has started to ask why his friends can run faster than him and why he is falling to his knees so much..i am completely devastated clare also..im feeling so helpless and alone and just dont know which end of me is up at this stage...
At 5:45pm on March 21, 2011, paula steele said…
hi clare hows things...have just become a member of this site and thought i would say hi...im from ireland and my son dylan has recently been diagnosed with duchennes...hope to maybe hear from you ...regards
paula

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