About

Why we decided to choose Haploid Identical Bone Marrow Transplant for Sickle Cell

2015

Diagnosed with Sickle Cell Disease (SS)

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. 


2016

First Major Pain Crisis at 8 Months Old

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. 

2021

Acute Chest Syndrome and More Frequent Pain

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. 

2024

Another Acute Chest and a Month Long Crisis

 ​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.

We were attracted to Haplo (Haploidentical Bone Marrow Transplant) because:


  • We did not be reliant on someone else's timeline. When you do Haplo, we knew that my husband or I could be her donor. Haplo uses a 50% half related match, which usually comes from a parent or sibling.


  • Being that she had no full matches and only 9/10 unrelated donors doing Haplo came with the same level of risks.


  • Although Haplo utilizes chemotherapy it uses a little less than gene therapy.


  • Gene therapy wouldn't be an option for another 4 more years and we didn't want to go through 4 more years of suffering.


  • Bone Marrow Transplant for Sickle Cell has been around longer than Gene Therapy.



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