lord08ball
Registered: 08/05/07
Posts: 1
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Reply with quote | #1 |
My wife and I are raising a beautiful 4 year old daughter that has SMA type II, as every family dealing with this we are plagued with dissappointments in treatment, knowledge, and financial help for this. We are looking around trying to find people in similiar situations to talk with and children that are around same age as our daughter to possibly visit in time and help her understand as time goes on.
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Rozie
Registered: 09/20/07
Posts: 1
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Reply with quote | #2 |
Hi there, my name is Rozie McClay and I have a beautiful 5 year old daughter Kiley, who has SMA type 2. We live in Centralia, Washington. My husband and I know first hand all the trials parents with SMA face every day. Kiley has just started Kindergarden and we are dealing with all the challenges that come with having a child in powerchair at school. With our kids it really does take a village! Kiley has been taking Hydroxyurea for 3 years now through Dr. Ching Wang at Stanford. We feel it has really helped her. Has your daughter been in any drug trials?
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