It required a coordinated effort of logistics, financial assistance, and of course emotional support to create this life-saving journey.
You may remember a young patient we worked with named Victor Garcia. At the age of 9, Victor was diagnosed with acute biphenotypic leukemia (BAL), a rare form of leukemia. He was being treated at a hospital in his home country of the Dominican Republic. His doctor determined that the only cure for Victor was a bone marrow transplant from a matching donor.
But there was no matching donor on the registry.
Since siblings represent the best chance for a match, the Icla da Silva Foundation was able to fund HLA testing for his 7-tear-old sister Neyyleyn.
We were happy to find out that Neyyleyn was a 100% match for her brother Victor. But unfortunately, the local hospital did not have the resources to perform the transplant.
Emotional, Logistical, and Financial Support
The Icla da Silva Foundation went into overdrive. We supported Victors’ family and helped coordinate his transplant under a clinical trial at Yale New Haven Teaching Hospital in Connecticut. Our team worked the logistics between the family, the doctors, and the consulates from both countries, assuring that Victor would be able to receive a life-saving transplant.
Thanks to financial support from donors like you, we were also able to fund transportation for the Garcia’s to the United States, while the Ronald McDonald House graciously provided housing.
It took many steps and multiple partners, but a little boy’s life was saved. The Icla da Silva Foundation is both proud and happy to have played a critical role.
Victor is doing well, he is back home in the Dominican Republic; going to school and playing baseball.
You can help us create more life-saving stories like Victors. Please consider a financial contribution to our Icla Cares program.
Written by: Bret Itskowitch
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.
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
Written by: Bret Itskowitch
“Little” Ricky Roman isn’t so little anymore, he is now almost as tall as his dad, “Big” Ricky. In February, Little Ricky turned 16, but the blood pulsing through his body is technically only seven years old. In May, he celebrated his 7th transplant birthday, 7 years after receiving a stem cell transplant from an unknown donor.
In September 2010, Little Ricky wasn’t feeling well. He was bruising easily and his eyes were a pale yellow. His parents rushed him to the doctor. One month later, he was diagnosed with severe aplastic anemia, a rare and serious condition in which the bone marrow stops producing enough new blood cells. It leaves you feeling weak and fatigued, with a higher risk of infections and potential heart complications.
Little Ricky was an active child, so his fatigue was an obvious sign that something was wrong. He liked biking, baseball and boxing. After diagnosis, his obsession with boxing took on a new meaning. While no one is prepared for a battle with cancer, Little Ricky became a true fighter.
The Search for a Match
It was determined by his doctors that a stem cell transplant was his only cure. At the time, there was no match on the Be The Match bone marrow registry. Aunts, uncles and cousins were tested. Unfortunately, no one was a match for Little Ricky. With the support of his family, friends and the Icla da Silva Foundation, everyone was determined to find a match. We held bone marrow drives, getting as many people as possible to join the registry, and we all hoped that a life saving match would turn up.
Ricky spent a year going back and forth to the hospital, for treatments, tests and observation. His mom had to quit her job so that she was always available for a quick trip to the hospital, an overnight stay, or weeks of treatments.
Finally, A Match Was Found
Little Ricky Roman, the fighter, received a successful transplant in May of 2011 at NY Presbyterian Hospital.
Someone who had joined the Be The Match registry was a match for Ricky. Fortunately, they said yes to a stem cell donation. Ricky has yet to meet the donor who joined the registry. He knows that it is a woman, and he is grateful that she said yes when she received the call asking her to donate. We hope to be able to arrange a meeting between Little Ricky and his donor.
Annual Ricky Roman Fundraiser
Since the time of his diagnosis, the Roman family has been very supportive of the Icla da Silva Foundation. They are avid sports fans; they ran together in our annual 5K, and for the past 8 years, the Roman’s have been hosting a Softball Fundraiser to support the Icla da Silva Foundation. We are extremely grateful for their efforts. The money they raise helps us continue fighting for patients who need a bone marrow transplant. You can click this link to find out more information about the Ricky Roman Softball Fundraiser and register a team.
If you are in or near Jersey City, join them on the field:
Saturday August 4
Caven Point Softball Fields, Jersey City, NJ
It’s easy to enter a team, or simply support their efforts through a donation.
We are very grateful and we appreciate their continued support of our efforts. We know many patients are thankful as well (click below to support the fundraiser).
Keep Fighting Ricky
According to his Aunt Maria, Ricky is doing well. He starts High School in the fall. He loves baseball, bikes, and playing video games. Of course all children love playing video games, often to the exasperation of many adults, but this is a special circumstance. Spending a year in and out of the hospital for treatments gives ‘playing video games’ a new understanding.
Keep fighting Ricky, keep playing, keep growing, and thank you to you and your family for continuing to raise funds for us.