September 13, 2021 | News
Asaya – A Birthday Success Story
You may remember a young boy we have been working with named Asaya Bullock. Asaya suffered from a rare disease called IPEX Syndrome. IPEX is a life-threatening, autoimmune disorder involving the intestines, skin, and endocrine glands. As a result, Asaya has suffered from severe stomach issues, migraines, body aches, rashes, and joint pain for most of his young life.
His only cure was a matching bone marrow donor.
We have been working with Asaya since 2015, recruiting potential marrow donors and providing assistance to his family. This video shows 4-year-old Asaya when we first began his search.
No Matching Donor
While thousands of donors were added to the national registry in Asaya’s name, a matching donor was never found.
As Asaya got older, his illness became worse. His health was deteriorating. He was in and out of the hospital multiple times in recent months.
After his original diagnosis, the doctors didn’t believe he would survive past the age of two. He was already living on borrowed time.
Can you imagine the pain and perseverance that his parents have lived with…
“You don’t ever sleep because you know at any point in time your baby could lie down next to you and he doesn’t wake up” – Charlene Bullock
“He doesn’t give up. I don’t give up. We don’t give up” – Vincent Bullock
A Rare Success
The family continued to ask, and the medical team finally agreed to a haplo transplant. A haploidentical transplant uses healthy, blood-forming cells from a half-matched donor to replace the unhealthy ones. Usually, the donor is a parent, since each of your parents represents about half of your genetic make-up.
They are not always successful.
On July 27, 2021, Asaya received a half-matched transplant from his dad.
The transplant was successful.
Three days after his transplant, on July 30th, Asaya celebrated his 10th birthday!
Asaya seems to be doing fine. His body successfully accepted 99.4% of the cells. His doctor says this was unheard of.
So far, there are no complications and he is eating and drinking on his own, which is a terrific sign.
Fortunately, there was room at the Ronald McDonald House in NYC. Asaya will have to stay for 120 days, remaining close to his hospital while they continue to check his progress.
We wish Asaya a long, healthy, pain-free life…with many, many more birthdays to celebrate!
Written by: Bret Itskowitch