August 15, 2017 | Patient Stories
Patient Story: Asaya Bullock
Asaya Bullock has past a major milestone. He celebrated his 6th birthday, despite the fact that he was diagnosed with I-PEX Syndrome at 8 months old and his parents were told that he would not live past the age of 2.
I-PEX (immune dysregulation, polyendocrinopathy, enteropathy, X-linked syndrome) is a rare genetic blood disorder that causes multiple autoimmune disorders.
This little boy has been fighting for his life for 6 years.
There is a cure, a bone marrow transplant, and it is relatively simple.
A PBSC bone marrow transplant requires a donor to take injections of filgrastimm over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The difficult part is finding a matching donor.
Most cells in your body contain HLA proteins. In order for a bone marrow transplant to be successful, the HLA proteins of a donor need to match those of a patient. A great deal of matching is determined by genetics and ethnicity. In Asaya’s case, his parents had a second child in an effort to find a match for their son. “As a mother, it is devastating to watch your child suffer and there is nothing that you can do to fix it,” say Charline Bullock, Asaya’s mother. Asaya’s parents, Charline and Vincent had a beautiful baby gir named Anaya.
Asaya received his sisters cord blood, but despite being a 7 point match out of 10, his body rejected her cells.
Asaya suffers from serious memory loss, body aches, stomach issues, and joint pain. “It basically hurts everywhere,” says his mom. Obviously, Asaya is a fighter, living twice as long as expected by his doctors.
Life is a series of ups and downs, and the same is true for the Bullock family. The birth of a beautiful baby sister, and the rejection of her cord blood. A donation from a registered donor, and another rejection from Asaya’s body. Recently, the Make a Wish Foundation sent the family to Disneyland. You can see the smiles as they met their favorite characters; definitely a well deserved “up” moment for the Bullock family.
Currently, the Bullocks have been living on the hopes of finding a match through the bethematch bone marrow registry. The Icla da Silva Foundation has organized 30 donor drives in the hopes of finding a match for Asaya. You can register to become a donor here:
As you would expect, living with a rare disease and traveling to various specialists across the country for treatment requires financial assistance. Asaya’s father has instituted his own GoFundMe campaign and even one of the Icla da Silva volunteers, Omari Jinaki, (read his story here) has contributed to raising awareness and funds for Asaya and his family here.
Asaya and his family has been searching for a match since he was eight months old. Would you please consider joining the registry in case you are a match for Asaya or someone just like him. You can also help us continue to make a difference in patients lives by making a financial contribution to the Icla da Silva Foundation.
Please help us find a bone marrow match for Asaya.