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Comment by PAULA KERR on February 3, 2013 at 6:13pm

Hello,

Our three precious boys have DMD (diagnosed 12 weeks ago). As you know there are no words to describe the devastation. We have no family history and I think we are still in shock. Our boys have duplication's of exons 3 -7, so they are in the minority. I need someone to tell me that we must not loose hope.......................... I so want to help them and all the other boys (and girls). I have read everything and contacted Professors of molecular biology and neurology...............so I know there is hope.......so why do I feel so hopeless? Time is our greatest enemy. Miracles happen every day........please God this vile disease can be cured; even slowed down. 

Comment by lisa burke on February 4, 2013 at 5:09am

Hi Paula,

Yes, there is hope out there - lots of things are being developed to slow down or stop the progression of the disease. I must also tell you (and you'll find papers on here about it) that mutations in the region of exons 3-7 are often associated with a milder phenotype. Hopefully this will be the case with your little guys and will 'buy more time' for the science to catch up. Take care. Lisa.

Comment by PAULA KERR on February 4, 2013 at 5:29am
Thanks Lisa. We did hear that about duplications and particularly with exons 3 - 7. We are starting to get into action mode here! Despite the dire financial state that Ireland is in; we are going to try and raise LOTS OF MONEY, in an attempt to boost the research funds! God help us all. Really appreciate your contact. Best wishes. Paula and her men x
Comment by lisa burke on February 4, 2013 at 11:13am

Hi Paula,

Yes, I do think every penny raised goes towards helping our sons. Your boys are totally gorgeous by the way! We have pals in Rosscarberry and are often able to visit (at least we were before the Swansea-Cork ferry went pop!) - maybe we'll be able to meet our boys up one day.

Take care,

Lisa

 

Comment by PAULA KERR on February 4, 2013 at 6:40pm
That would be lovely Lisa. We are in Roscommon but travel well. Your sons are gorgeous too! We are so blessed. All will be well; all manner of things will be well. xxxxx

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