December 11, 2018 | News, Patient Stories
A Season For Giving – Part 1 – The Gift of Life
SEASONS GREETINGS!
This Holiday season we are sharing four inspiring stories from our patients and friends. We hope that these stories move you and incite you to make a donation.
The Season represents a time for giving. For us, it’s about Giving the Gift of Life. We use the funds that we receive to add more potential donors to the Be the Match registry. We are hoping to find that perfect match, a Gift of Life for one of the many patients that we work with.
One of those patients is Asaya Bullock.
When Asaya was just 8 months old, he was diagnosed with a rare autoimmune disease called IPEX syndrome. A person with IPEX lacks the ability to regulate their immune system, they loose the capability to defend against disease. It can also cause the immune system to attack the body’s own tissues and organs.
Asaya often feels pain throughout his entire body. Although he is allowed to attend school, he misses many days due to treatments, or simply because he doesn’t feel up to it. Asaya and his family have been searching for a bone marrow donor for most of his life.
Asaya is African American and West Indian Caribbean. Unfortunately, his ethnicity is not well represented on the bone marrow registry. Only 23% of African American patients with a blood cancer are successful in finding a matching stem cell or bone marrow donor. By comparison, Caucasian patients with the same diagnoses, have a 77% chance of finding a matching donor.
There simply aren’t enough potential donors who have joined the registry. The Icla da Silva Foundation is trying to change this by adding more people to the registry who are ethnically diverse.
In the last 7 years, the time Asaya has been fighting his disease, we have added more than 200,000 potential donors to the registry. Unfortunately, there is still no match for Asaya.
We will continue until we find one.
By donating just $100 you can help defer the cost of adding one person to the bone marrow registry. With your help, we will find a life-saving donor for Asaya and many other patients like him Please donate and help us Give the Gift of Life to children like Asaya.
You can read part 2 of our 4 part series here.
Icla da Silva is a 501(c)3 organization and your donation is tax deductible.
Thank you.