After 9 years, Asaya finally received his bone marrow transplant – three days before his 10th birthday!

You may remember Asaya Bullock from earlier stories on our website and social media pages. Asaya suffered from a rare disease called IPEX Syndrome. IPEX is a rare, life-threatening, autoimmune disorder, which caused Asaya to suffer 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 urgent needs assistance for his family. This video shows 4-year-old Asaya when we first began his search.

There Was 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 medical team agreed to the family’s request for a ‘haplo’ transplant. A haploidentical transplant uses healthy, blood-forming cells from a half-matched donor. The donor is usually a parent – since each parent 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 rare.

So far, there are no complications and he is eating and drinking on his own, which is a terrific sign.

Next Steps

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!

Help us support more patients like Asaya by considering a donation

PLEASE DONATE

Written by: Bret Itskowitch

The 2018 Hope Gala takes place on Wednesday, October 17th at 6:30 PM.  The dinner and dance is black tie optional and will be held at Guastavino’s, 409 east 59th Street in New York City.  The Hope Gala is the largest fundraising event for the Icla da Silva Foundation.

Why Are We Celebrating?

The Hope Gala celebrates our achievements and raises funds to continue our fight against leukemia and other diseases treatable by bone marrow transplants.

Thanks to your support, so far this year, the Icla da Silva Foundation has held 1374 donor recruitment drives across the country.  At those drives, we have added 20,246 potentially life-saving donors to the Be the Match bone marrow registry.  We aren’t finished yet.

Our focus is to increase awareness, and register more donors who are ethnically diverse.  Unfortunately, blood cancer patients who are ethnically diverse, have less than a 50% chance of finding a potential match.  We want to change that.

Why Should You Attend?

Your attendance and the resulting donations this year, will help us add greater diversity to the bone marrow registry. A portion of the funds raised, also go towards our Patient Support Services program.  The program helps patients and their families deal with some of the financial difficulties when presented with a life threatening blood cancer.

Icla da Silva uses it’s knowledge and experience to guide patient families with information, logistics, and emotional support.  With the funds raised last year, we have been able to help patients with transportation, lodging and meals related to their bone marrow transplant and treatment.  We have also assisted with HLA typing and medical expenses.

Will We See You This Year?

This years Hope Gala will include more than 300 influential guests from the worlds of business, healthcare, the arts, philanthropy, and academia. The evening promises to be an affair to remember. Please extend an invitation to your friends and associates.  Cocktails and a silent auction begin at 6:30PM.  Dinner and dancing start at 7:30 PM.

JOIN US IN OUR FIGHT TO HELP MORE PATIENTS 

please RSVP today