From 9AM-6PM on Tuesday, April 19, the Trojan Knights gathered at Tommy Trojan to support a bone marrow drive aimed at finding a donor match for two young kids from Riverside suffering from hemophagocytic lymphohistiocytosis (HLH).
Interested participants stopped by the tables to fill out an application form to be listed anonymously on the Be The Match Registry® and get a cheek swab which will be analyzed for potential donor matches.
The two children, Xander and Anaiya, inherited the rare genetic disorder HLH, whose “only cure is to receive a bone marrow transplant, and it’s very, very hard to find a matching donor” said USC junior Nicole Parisi, who initiated this bone marrow drive with DKMS, the world’s largest bone marrow donor center.
Said the childrens’ mother Nicole Justiz, “My kids are biracial. My husband is an African American and since I’m Caucasian, it’s ten times harder to find a match.
“So I was very happy when UCLA’s bone marrow transplant program called me, and they connected me with Nicole [Parisi] here at USC.”
Said Justiz: “HLH is a blood disorder which affects the immune system, so they need a new immune system.
“Any infection like from viruses and bacteria that we could fight off, they will catch it. Their system cannot fight it off, and it will be fatal for them.”
According to the Center for Disease Control , HLH primarily affects young children and is an autosomal recessive genetic disorder which causes overproduction of histocytes, immune cells which destroy pathogens, and lymphocytes.
The overabundance of these immune cells causes them to accumulate in healthy tissue and disrupt normal organ functions. Xander and Anaiya have the primary form of HLH, called familial or FLH, which is inherited.
Symptoms include normal signs of infection, such as fever, paleness, or weakness, but they progress to spleen enlargement and seizures and other neurological signs. HLH is fatal if untreated, and patients undergoing current treatments still experience repeated remission without a bone marrow transplant.
Due to the wide variety of symptoms, diagnosis is difficult until the advanced stages of HLH.
“My daughter [Anaiya] is currently twenty months old, and she was not diagnosed until my son [Xander] was born about five months later,” Justiz said. “We knew she was sick, but we didn’t know why until my son was diagnosed at Mattel Children’s Hospital. It’s a really rare disorder and hard to diagnose.”
After learning about HLH, Justiz signed up her kids on the bone marrow registry and began doing research on HLH. She contacted hospitals in Cincinnati with the leading researchers in HLH, UCLA Medical Center, and Children’s Hospital at L.A. in hopes of finding a cure.
“I discovered that only this bone marrow transplant will allow my kids a full term life,” she said. “There is no other way. My kids are not in the hospital right now, but I can’t take them out of the house because they’ll catch everything. I have to have a home-health nurse.
“Now I’m here today at USC in hopes of finding a donor for my children.”
According to DKMS guidelines, bone marrow donors must be between the ages of 18-55, “in good general health, weigh at least 110, but not exceed a body mass index of 40, and be willing to donate to any patient in need.”
Said USC junior Dana Brown, “I wasn’t aware that I could donate. It’s not as painful as I thought, and it’s really simple to register and to be in the registry.”
“Registering takes only about 5-10min,” Parisi said. “If you’re a match, DKMS will contact you directly.”
According to Parisi, there are two ways to donate.
“The first way, which is used in the majority of cases, is similar to donating blood but it takes several hours,” she said. “It’s not a huge painful process, and it’s really not that bad.”
According to DKMS, this method, called Peripheral Blood Stem Cell Donation (PBSC), is the most commonly used. Stem cells are collected via the donor’s bloodstream in a non-surgical, outpatient procedure which can be completed within 4-6 hours over the course of 1-2 days. Donors are also injected with filgrastim protein for five days to increased stem cell count within the blood. Side effects are minimal to none.
The second and less common method is direct bone marrow donation. According to DKMS, donors undergo general anesthesia during a 1-2 hour, outpatient, surgical procedure which extracts marrow cells from the donor’s pelvic bone using a syringe. Side effects include some pain and bruising, but donors can return to regular activity within a week.
Said Parisi: “At 10:30 in the morning, 35 donors have already registered even before the lunch crowd.
“We really have to thank the Trojan Knights for stepping up and helping out. And if you could not make it out today to sign up, you can still register online at www.getswabbed.org.
“Just think, you’re actually saving someone’s life, and you’re possibly the only person who can save that life.”