March 15, 2019 | In the News, Patient Stories
Calle Ocho Music Festival – Not Giving Up
At 6 AM on Sunday, March 10, representatives from the Icla da Silva Foundation were at the Calle Ocho Music Festival in Miami, Florida.
For the team members who attended, it had nothing to do with music. It was all about supporting the family of Julian Morales, with the hope of finding a matching stem cell donor in order to save his life.
It was about Saving Julian.
Fighting For His Life
It was about setting up tables and organizing volunteers so that more people understood the need to join the Be The Match bone marrow registry. It was about eliminating the fear of joining and explaining the fact that only 7% of people on the registry are Hispanic. This is why patients with a Hispanic or Latino background have a more difficult time finding a match. There aren’t enough potential donors on the registry.
Being at Calle Ocho was about doing everything we can to give Julian a 2nd chance at life.
It was about adding more potential life-savers to the registry.
Watch Julian and his Mom on NBC Miami
Not Giving Up
Julian suffers from a rare, life-threatening blood disorder called Dyskeratosis Congenita and bone marrow failure. He has been suffering for 4 years. Since there is no match in Julian’s family, they need to find a donor who is not related. They have been searching for a match for 4 years. There is still no match for him on the Be The Match registry.
Not yet.
As you would expect, Julian’s mother Mayra is desperate to save her son’s life. She is pleading for help from the Hispanic community, “…it’s a matter of life and death.”
For the Icla da Silva Foundation, this past Sunday was about not giving up. We can listen to music later.
Right now we need to find a matching donor for Julian.
You can join the registry by clicking the link. You will receive a kit in the mail which is used to swab the inside of your cheek. When you return that kit to Be The Match, they will test your HLA type to see if you are a potential match.
You or someone you know may be a match for Julian. Please join and share with others.