Help Rhyder find a life-saving blood stem cell donor
Help Rhyder find a life-saving blood stem cell donor
Original published date: 1/4/2023
Rhyder has fought a rare disease his whole life. He needs someone like you to answer his call.
On the outside, Rhyder is just like other kids his age. He loves hanging out with his friends and his family. He plays at the beach in his hometown in Hawaii. He's a big fan of M&M's—especially the brown ones. He even loves school.
But on the inside, Rhyder battles a rare autoimmune disease called hemophagocytic lymphohistiocytosis (HLH). As his mom, Iza, describes it, HLH causes Rhyder's immune system to "go into overdrive." His white blood cells build up and attack vital organs and systems throughout his body.
Rhyder takes medicine each morning and night. He goes to the hospital every eight weeks for an infusion to manage the disease. His only chance for a cure is a blood stem cell transplant from a donor—but there's not a suitable match for Rhyder on the NMDP RegistrySM. At least not yet.
He needs more people to answer the call to join the registry (Opens in a new tab) so he can keep being a carefree, fun-loving kid with the “aloha spirit.”
“We just take it a day at a time”
This isn’t the first time Rhyder’s family has had to search for a donor for a child. His older brother, Rhaiden, also had the genetic form of HLH. Fortunately, Rhaiden found a donor on the NMDP Registry. He had a blood stem cell transplant at Cincinnati Children’s Hospital in 2015 and is doing well today.
Iza discovered she was pregnant with Rhyder while the family was in Cincinnati for Rhaiden’s transplant. During his newborn screening, doctors confirmed Rhyder had HLH and would need a transplant, too.
Doctors use markers called human leukocyte antigens, or HLA, to match patients with suitable donors. These markers are found on most cells in the body. People inherit HLA from their biological parents, but not all siblings always have the same HLA.
That was the case for Rhaiden and Rhyder. Rhaiden had seven potential donor matches on the registry. Rhyder has none.
It breaks the hearts of his family members to see Rhyder in pain and having trouble finding a donor.
“It’s really hard as a parent and caregiver to see your child going through all of this. You feel so helpless,” Iza shared. “You can’t do anything; you can’t help them. But with NMDP, with people signing up to be a donor, that’s the way [to help].”
She added, “It’s so easy. It’s just a swab in the cheek, your information and then you’re going to be on the registry. If not for Rhyder, for many other patients—kids and adults—out there who need a match as well.”
Good goes a long way with a simple cheek swab
Rhyder got support from hundreds of people who turned out at Brigham Young University (BYU)-Hawaii for a donor registry drive—including Aquaman star Jason Momoa.
As an advocate for NMDP, Jason raises awareness about the need for blood stem cell donors and urges people to step up and save a life.
It doesn’t take much. You just got to swab a cheek, and you can save some lives.
Jason Momoa
Actor and NMDP advocate
“I get emotional when I think about it. If it’s my kids or your kids … it doesn’t take much. You just got to swab a cheek, and you can save some lives,” Jason said during his speech at BYU-Hawaii.
You can give hope to patients like Rhyder who need someone like you to join the registry (Opens in a new tab). His brother, Rhaiden, says it best: "Please sign up and please be a donor for Rhyder and everyone else."