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Thank you for the responce.
Dr. Margolis is the Dr they recommended at the NIH. It's close enough to Michigan that the trips should not be that bad (when the ferry is open lol).
My oldest son and my daughter were more than happy to be tested for a match and when my daughter came up at a perfect match she was like lets do this. She is more than happy to do what ever her big brother needs.
But it is up to him to make the final decision, we just want him armed with as much info a possible not just with stats but from people who have been through it.
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Shelby, mother to son 17 diagnosed PNH in Spring 2012. meds: Soliris, multivitamin, folic acid, and daily penicillin
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