When you’re seven, you want to to go to school, play with friends, attend birthday parties and family gatherings.
If you’re seven suffering from IPEX, life is limited. This describes little Jax Ramirez.
And though he lives in Pittsburgh, folks in and around Clinton County can help Jax — and kids nationwide — this weekend in Wilmington.
Jax’s story
IPEX Syndrome causes problems with the immune system, which normally protects the body from foreign invaders like bacteria and viruses by recognizing them and attacking them. The immune system can malfunction, and attack the body’s own tissues and organs instead, known as autoimmunity. IPEX can be life-threatening to a child.
Jax’s mom, Missy explains his battle. “I wish to share information about becoming a donor in the National Bone Marrow Registry in honor of Jax, and to educate about the disparity currently existing in the registry.
IPEX is extremely rare (1 in 1.6 million). Most children do not survive their first year of life.
Jax is a miracle, but he needs a miracle.
He has a background of Hispanic, German and Slovak. That means his HLA is unique, and there is not enough diversity in the registry to give kids like Jax a second chance at life. HLA is human leukocyte antigens, proteins or markers on most cells of our bodies.
This is a crisis for all people of diversity. There are 31 million people in the registry, but no match for Jax.
To put it in perspective, for a person of European decent who needs a transplant, there is a 79 percent chance there will be a match. Compare that to someone of Hispanic decent, at 48 percent. The statistics are even more grim for someone black, which is 29 percent.
The minority cultures are under represented, and we are doing our part to build a base for all who are in this population in need of stem cells for their successful transplant.
People in general good health between 18-40 can be a part of the registry. The process is simple. Create a kit using you smart phone, swab your cheek, continue to register your info onto your phone to complete your account. In about six weeks you will get notification that you are registered.
If you are a match with a recipient, you will receive a call telling a little bit about that person. All donors donate stem cells.
One in 450 on the registry are called to save a life. Eighty-five percent do that through a blood draw. You will go to The Match Center (all expenses paid), and likely some social media pictures and asking your “why” to save a life. Fifteen present of donors do it the traditional way under general anesthetic through the pelvic bone.
Both are outpatient procedures without long-term side effects.
At Murphy and at WCC
If you want to help Jax or other children who are under represented, you can register this weekend here in Wilmington.
Dianne Garrett, a trustee of the Murphy Theatre, said “I am touched by Missy and Jax, and am blessed at the experience of being a part of this effort.
She will be set up during this Saturday’s McGuffey Lane concert, which starts at 7:30 p.m.
Murphy Theatre Executive Director Steve Burnette said, “The Murphy Theatre is excited to ‘play our part’ in this worthy effort, and are so grateful to McGuffey Lane for their participation. What better example for the theatre as a community leader than to assist finding a donor not only for Jax, but maybe for one or two more kids in the process. It all starts with kindness and generosity of the wonderful people that support The Murphy.”
On Sunday, Garrett will be at Wilmington Church of Christ, 909 W. Locust St., during the 9:30 and 11 a.m. services.
Pastor Dale McCamish added, “Maybe you can be an angel for Jax, or someone else’s angel.”
