Simon Middle School sixth grader Miriah Pinales is hoping that a match is found during the from bone marrow registry drive May 5 sponsored by the Hays High School Health Occupations Student Association (HOSA). Registration at the drive – to be held on the Hays High campus – can potentially mean a life-saving procedure for Miriah or other patients throughout the country. (Photo by Jim Cullen)
by JIM CULLEN
Simon Middle School sixth grader Miriah Pinales is, in most every way, like every other sixth grader. She is now twelve years old and she’s looking forward to soon being a seventh grader at Simon. She wants to be like everyone else in her grade – growing up and becoming independent. For all practical purposes, she is like everyone else, with one important difference. Miriah has Glanzmann’s Thrombasthenia, a rare blood disorder that can cause her body to bleed without stopping.
It isn’t something about which ordinary treatment can do. Miriah’s blood platelets don’t perform properly. She can have transfusions, but her body has created an antibody that rejects new platelets. A personal biography created for her to tell her story lets her explain that she has to be careful when playing outside “or just doing normal activities like eating because if I bite my tongue the doctors might not be able to stop the bleeding.”
The disorder is considered a lifelong disability, but Miriah’s doctors have determined that a marrow transplant could be a cure. She is currently on the national marrow search list – but a donor has yet to be found.
To that end, a Bone Marrow Registry Drive is being sponsored Thursday, May 5, at Hays High School by the campus Health Occupations Students Association (HOSA), from 7:30 a.m.-5:30 p.m. Common perceptions (misperceptions?) about the ultimate, long-range implications of a match, of course, suggest a potentially uncomfortable result. Hays HOSA sponsor April Wheeler explains otherwise.
“Being on the registry is painless, I promise,” she says. Once on the registry, Wheeler notes “there is only a very small chance that you will ever be matched with someone (Miriah or anyone else on the registry) whose life is counting on your donation.” She says in her personal experience, she’s been on the registry for 10 years and has never been contacted about a match, though if she is contacted, it means she’s one person in three quarters of a million people who’s a potential match for someone in need.
In that case, today’s reality is that a potential donor is most likely to be asked to provide a peripheral blood stem cell (PBSC) donation. Wheeler explains that it is a “non-surgical, out-patient procedure, similar to donating blood.” She adds that “very few” donor matches are asked to go through the surgical procedure of actually donating marrow. Those who are asked and agree are asleep for the procedure, with only soreness (similar to that from intense exercising) for a few days.
“But you will have saved someone’s life,” Wheeler affirms, adding that, on request, donors may meet the person whose life they’ve saved “The most painful part of bone marrow [transplants] is for the person receiving the transplant, not the donor,” she says.
OK, if it’s that easy, how do you go about it? Donors must be 18-60 years old and are advised to check in at the front office of Hays High School starting at 7:30 a.m. Thursday, May 5, and tell the staff they’re there for the Bone Marrow Registry Drive.
They’ll be directed to the actual site to fill out paperwork similar to a doctor’s office visit (all information is confidential) and a swab will be used to collect cells from the inside of a cheek. Donors must be willing to donate to any patient in need. It’s a simple as that.
For more information, visit BetheMatch.org or call 512-569-9973. Hays High School HOSA sponsor Wheeler can be reached at [email protected].
