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My name is Maylane, I will be almost 2 years old on January 24, 2022. Since I was born, I have been followed at the Caen University Hospital (CHU de Caen); I was diagnosed with a rare disease called BLACKFAN-DIAMOND.
Blackfan-Diamond anemia (ABD) or congenital erythroblastopenia is a rare, constitutional anemia, usually diagnosed in the first months of life. It is characterized by the bone marrow's inability to produce red blood cells.
Today my bone marrow no longer produces white blood cells either, so I have to receive a granocite injection every week. In addition, I have had many transfusions, and the problem is that my blood contains far too much iron. There are, of course, treatments, but given my young age and my disease they would not be suitable, as my mother often says.
Because of the seriousness of my condition, the doctors proposed to my parents that we proceed urgently with a bone marrow transplant. But to perform this transplant, I must undergo HIGH-dose chemotherapy, which means 5 days of chemo 22h/24 (the equivalent of 6 months of chemo...) to completely wipe out my bone marrow so it can receive the new one. The problem is that the chemo will make me sterile; the doctors proposed operating to remove one ovary, freeze it in a specific freezer, and when I am ready in a few years re-implant it so I can have children.
But all of this has a cost, unfortunately, and my parents are already doing everything they can to provide for my needs and my illness. Mom has to stay at home with me because of my condition; the procedures she started with the MDPH for my disability can take 4 to 6 months to be processed, and my transplant is scheduled for the end of the year.
I send you kisses. Enjoy every moment spent together—when misfortune affects health, you no longer see life the same way.
Dad, Mom, my brothers and I thank you in advance for taking a few minutes to read my description.
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