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Started this discussion. Last reply by Colin McKenzie Mar 27, 2009. 7 Replies 0 Favorites
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What a beautiful little boy! Thanks for the note. Glad to hear he is doing so well! Keelan's just started taking more steps by himself and is talking/signing more. Is Skyler eligible for the PTC124?
Willie will be having another muscle biopsy 4-8-09 for the trial. His trial is nearly over. It appears that his stamina and strength has improved. I just hope that what we are seeing is what we want to see.
I pray for all the boys and their familes with this disease.
Sorry I have not been keeping up with emails or blogs. My grandson Willie was diagnozed when he was 3. We live in Clermont and would like to chat with you.
Sometimes with this disease you read everything you can possibly read and other times you just can not face it, My daughter has her ups and downs with this.
He is in the PTC124 clinclal trial which has been very difficult for the family. As she has a 10 year old son that she has to leave behind when she goes with Willie. Thank God he is free of Duchennes.
I promise, I will make a bterr effot to keep in touch.
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