My brother Jason Matthew Boulais is 23 and recently has been diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH). Which is a very rare disease that is characterized by destruction of red blood cells, blood clots, and impaired bone marrow function (by not making enough of the three components). Only affects 1-1.5 persons per million. PNH is closely related to aplastic anemia which is a rare form of anemia that Jason has which ended up evolving into PNH. PNH occurs when mutations of a gene called PIG-A occur in a bone marrow stem cell. Stem cells give rise to all the mature blood elements including red blood cells , which carry oxygen to our tissues; white blood cells , which fight infection; and platelets, which are involved in forming blood clots. All of this is basically means is that Jason has bone marrow failure. In order for him to get better he needs a bone marrow transplant, blood transfusion and stem cell transplant.The median survival rate for this is 10 years if not treated.
Unfortunately I found out that I am not a match as a donor and neither are my two sisters. There are potential donors but we are still waiting to hear back on those. For those who don't know him; he is an extremely fun, exciting, caring, thoughtful person. He is my best friend and is my rock and I wouldn't know what to do without him. My family and I need help with the medical and travel expenses that won't be covered by the insurance companies. So any little bit will help and is greatly appreciated. My family and myself thank you.
- Janet Rice
- Nichole Lapierre
- Christine & James Kupernik
- Mary Quirk
- Sabrina Gogan
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