[evansmom]

Hi Paul,

Sorry to hear of your situation. I echo Ruth's comments. While it is critically important for you to gather information and learn as much as possible about your bone marrow failure disease, try not to jump too far ahead. One of the mantras that we all likely live by on this forum is taking it one day at a time. The good news is that you have a diagnosis that can be treated, as opposed to getting the news to get your affairs in order...mantra #2...count your blessings.
Should a BMT be recommended, your siblings and half-siblings will be tested. God willing, a match will be identified. If there is no match, the marrow registries will be searched for the best possible unrelated donor.
My son is around 200 days post unrelated BMT and has done very well. He is 11. Of interest, his donor was NOT a perfect match but rather a 9/10. The mismatch was on the allele of DQB1, which is not a super important area of consideration but all that to say that even some imperfect matches can be very successful. The art of bone marrow transplantation has been so refined and perfected over the last 10 years.
So as long as your medical team has very good experience with diagnosing and making recommendations for your bone marrow disease, keep your chin up and your hopes high. We'll all be rooting for you here!

The link to my son's site is below. Feel free to visit.

Best regards,