I have spent the last few days looking at the forum and I am very impressed. I have been waiting for a site like this for years. I have spent years angry, frustrated, confused, irate, astounded, fabbergasted and infurated with all the doctors, health visitors, social workers, teachers, OTs, physios etc, with no-one to share it with apart from my husband (who just says 'now try to stay calm'!!!). Now watch out - I can vent all my frustration and anger into words on the forum and everyone will understand exactly how I feel.

Actually it has got slightly better since my son Ross moved to a specialist school for physical disabilites but i still tend to shout at the wheelchair services and Ross still does not have enough physio or access to hydrotherapy. I do worry when Ross gets older and moves from the paediatric services to adult services as i have been told that there are no resources - whats new

It has to change
We have enough to cope with. We do not need to fight for the care our boys should be having. Ross was diagnosed when he was 9 weeks old on newborn screening. Services have not really improved that much in 14 years, we still do not have a funded service for DMD - no specialist nurse or physio. I have decided i have been quiet for too long and this is the year that i need to get some action. Who is with me!

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Comment by Lynne Taylor on February 3, 2009 at 4:58pm
Hi Marian
Thank you so much for kind words and encouragement. Its great to know that we are not alone and that there are families out that understand. I am not sure how many DMD cases there are in the UK but in Wales out of 34,000 births every year 3 or 4 boys will be born with DMD. The newborn screening is not mandatory it is offered to all parents in Wales when the baby is 7 days old. Also Wales is the only country in the UK that has newborn screening. Some families opt not to have the baby tested and that is okay. I am glad I knew when Ross was a baby as I know I would have found it more difficult to find out when he was older. 2008 must have been such a tough year for you, finding out both your boys were affected. I will never forgot the moment i was told I will remember iT forever. I grieved for my boy who did not have duchennes for a long time, almost a year. But Ross has helped me cope because he gets on with it and it is difficult to feel sad when he is around because he enjoys his life so much. Your boys are so cute.
Take care
Best wishes
Lynne
Comment by Marian Lamberson on February 2, 2009 at 10:03pm
Hi Lynne, I am a carrier mother of two DMD boys. We found all this out in 2008. My youngest is 20 months....I would be interested in why it is mandatory to have newborn screening of DMD? I read somewhere that it was almost three times the cases in UK? Anyway, you've got a fighting spirit girl, thanks for the lift.
You are not alone in your fight. I am right there with ya! There are plenty of moms and dads here who will help you, as you have helped me in your way with your fighting words!
Your kids are true beauties. Take care momma!!!!

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