David's 2nd Birthday with Grandpa and Grandma McNally. Photos by Grandpa.
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My son had a mild common mutation of Wiskott Aldrich Syndrome (WAS). We decided, after 2 years of research, to not do the BMT but one month after our decision, he had a brain hemorrhage from jumping on a trampoline. His hemorrhage was treated with platelets but we were quickly encouraged to do the BMT. When he was two yrs old, he had a BMT with a 10/10 unrelated adult donor. We hope our research will help other families struggling with WAS. Feel free to email me: aimeemcnally@gmail.com
2 comments:
Aimee, David, and family
You are a very courageous mother and doing a great job with your family. Good job on all of your research and educating yourself on this syndrome. Exactly 1 year ago this month, my son (2 1/2yrs at the time) was being tested for WAS and we had to wait 4 weeks for the results back from Cinncinati Childrens Hosp. It was the longest 4 weeks we had. In that time I researched and researched this syndrome and cried and cried. Thankfully, we was negative. He has ITP with other medical symptoms that could be mistaken for WAS and has baffled his Hemo's. I was reading your posts and how much you have had to endure and be strong for and think you have done a wonderful job.
Cynthia
thompsonfmly4@frontiernet.net
Sacramento, CA
Aimee, and family
I just found this web site today. A lady from Sweden (Suzanne) sent me a email. I also had a son with WAS. He would be 29 years old, Michael passed away 6-6-80. We were seen at NIH also. We had no match for a bone marrow transplant. I can really relate to everything you and your family are going through. The term "time bomb" is sooooooo true. Our son wasn't sick alot either, and I hoped Michael had a mild case, or the doctors were so wrong with there diagonse. You know so much more then we did 25 years ago.
My thoughts and prayers are with you and your family. I also live in the California area. email aurpat@inreach.com
Karen
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