Why we decided to choose Haploid Identical Bone Marrow Transplant for Sickle Cell
We wanted to explore all options in order to give our daughter the best course of treatment. The most highly recommended option is a full match bone marrow transplant, however after checking the registry Amaya had no full matches.
Gene therapy was also presented as an option however currently you must be at least 12 years old and Amaya was 8 at the time of our consultation.
Although we were discouraged by her medical providers because of the risks involved for us the risk were worth it. We couldn't imagine a lifetime of going in out of the hospital, the constant pain that would come out of nowhere and the steady progression of her condition.
In November 2015, we were so filled with joy with the birth of our beautiful first born daughter, Amaya. 2 weeks later, I was completely devasted. After taking the newborn screening test it was discovered that Amaya was born with Sickle Cell Disease.
At 8 months old Amaya had her first major crisis in her hip area. We had to take her to the emergency room and she had to be given morphine for the pain. As soon as she was 9 months old she began taking Hydroxyurea. For years after this point, she had no pain crisis.
Hydroxyurea slowly became less effective overtime. She never was able to progress her dosage to an amount that was appropriate for her height and weight.
A couple of times a year she would get hip and leg pain so bad that she was not able to walk.
Amaya spent most of March and April in the hospital. She was having very painful pain crisis that could not be controlled or managed at home, this time in her arms.
By this point we knew we had to do something.
Both my husband and I were tested to be Amaya's match. After testing I was chosen to be Amaya's donor.
On day 30 after the procedure Amaya was tested at it has been confirmed that she has engrafted 100%.
We will continually update our life after transplant on our blog sharing what life after transplant is like for us.