Wisconsin boy sparks campaign to find bone marrow donors
ANTIGO, Wis. (AP) — Don’t call Holden Zarda a superhero, because they aren’t real.
Instead of nabbing villains in imaginary webs or taking down the Joker with a few well placed BAMS!! and POWS!! 10-year-old Holden is working to save hundreds — thousands eventually — suffering from life-threatening blood cancers.
And he’s doing it all while racing against time himself, awaiting a tentative mid-November date with a donor whose bone marrow may hold the key to possibly stop or reverse his leukemia.
He’s no fake superhero. Holden’s the real deal.
Holden, son of Jamie and Kevin Zarda of Pickerel, didn’t start out to do great things.
The fifth grader at Elcho Elementary School just wanted to wrestle, play baseball and hang out with his family and friends.
But that changed when he was diagnosed in February 2018 with Acute Lymphoblastic Leukemia (ALL) Burkett’s Type. Only 2 percent of children diagnosed with ALL in the U.S. have Burkett’s type and an irregular genotype of Holden’s disease made him only the sixth person the world with this very rare form of leukemia.
At first, chemotherapy worked, and Holden went into remission for 11 months. But in July he relapsed, this time with ALL-B Cell type.
It was probably, his family says, caused at least in part by the rounds of chermo that put him into remission in the first place.
“I remember that day as if it were yesterday,” Holden’s mother, Jamie, told the Antigo Daily Journal.
“But it didn’t get him down,” grandmother Debra Shannon added. “Except that he was supposed to pitch that night.”
Chemo won’t cure — only delay — the disease’s deadly progression. Holden’s only hope is finding a life-saving blood stem cell donor.
Since his diagnosis, Holden, his mom and dad, and grandmother, haven’t been content to sit back and let the clock tick.
Instead they are leading the charge to increase the odds. The family is working with the Wisconsin-based Be the Match registry on the “Holden Needs A Hero” campaign, stressing the need for people to become bone marrow donors.
The registry is operated by the Community Blood Center, based in Appleton, and seeks donors between the ages of 18 and 44 who could be a potential match for patients such as Holden and many others.
According to Jessica Kleinberg, community engagement specialist, Be The Match is the world’s largest and most diverse registry. It exists because 70 percent of patients in need of a life-saving bone marrow or blood stem cell transplant cannot find a genetically matched donor within their own families.
“These patients and their families depend on Be The Match to find the donor who will give them a second chance at life,” Klingberg said. “A bone marrow or blood stem cell transplant is oftentimes the last or only hope for a cure for patients battling Leukemia and Lymphoma and the only cure for Sickle Cell Disease and Aplastic Anemia.”
Despite over 20 million people on the Be The Match Registry and another roughly 15 million more worldwide, not every patient can find their match, she stressed. Last year, over 10,000 patients were unable to find a matched donor.
For those ages 18-44, registration is not difficult. They simply log on to join.bethematch.org/findholdenshero and complete the registration form. A cheek swab kit will be mailed to them within a few business days and the registrants simply swabs the inside of their cheeks, place the swabs back into the kit, and use the postage prepaid envelope to send the sample back to the repository.
“That’s it,” Klingberg said. “We will call them if they are ever a match for a patient in need.”
Statistically, one in every 430 registrants will go on to donate. Be The Match covers all costs such as meals, mileage, hotel prior to donation along with all medical expenses.
Holden — outgoing, photogenic and glib — is the perfect poster boy to push the very important cause.
“Nothing stops him,” Jamie says. “We have videos of him having his chemo treatments and playing video games, racing down the halls and visiting with nurses and giving comfort to other patients. He gives them Popsicles and urges them to take their pills.”
In his latest poster, he is billed as “The Amazing Holden,” in Spider-Man regalia and labeled as “A New Superhero Emerges.”
The “movie credits” list his parents and grandparents, family members, doctors and nurses as cast and crew.
Another poster, on a more serious vein, shows a smiling youngster and the heading “This is His Race Against Time,” with donor and registry information.
Locally, the entire Elcho school has embraces the cause, with students and staff wearing blaze orange shirts for Blood Cancer Awareness Month. The shirts feature Holden’s likeness and proclaim “Zarda Strong.”
And a recent spaghetti dinner brought out dozens of community members, including the entire football team.
“We had to get more spaghetti,” Jamie said.
“The whole community has really turned out,” Debra said. “The support has been just overwhelming.”
It’s working. To date, Klingberg said Holden’s drive has recruited nearly 100 registrants.
But so much more needs to be done. While other worthy causes gain celebrity endorsements and public service announcements, the push for more bone marrow donors has been relatively subdued.
The Zardas are tying to change that through Holden’s participation and also be reaching out to others, including country music superstars Blake Shelton and Luke Bryan, whose music Holden loves, listening and singing along constantly on his way to and from his Madison treatments.
“We really undersell it,” Debra said. “Awareness is key. By being a donor, you can see the product of what you have done. That child you saved might grow up to be a doctor or another hero or a famous actor or singer.”
For Holden, his mom and dad, grandmother and dozens of family and friends, the wait is nearly over.
But there are risks. The donor could back out — it was heartbreakingly happened to patients before — and the chances of successes, while good, are not overwhelming.
He will be admitted to UW Children’s Hospital in Madison on Nov. 4, undergo treatments that will kill off his blood cells and destroy his existing immune system, receive the infusion of stem cells, and wait.
For the donor, it will represent about 30 hours of his or her time. For Holden, it signifies a lifetime.
Debra recalls being at UW Hospital when the university track team came to visit.
“I told them, ‘OK, you guys are heroes on the field, now do you want to be a real hero?’ Maybe one of them could be the person who saves a life.”
The wait continues for others, and that will only change as Be a Match and other registries swell with donors.
“It’s a miracle to know that somewhere out there, someone is willing to make that that commitment and even when faced with personal responsibilities — work, family, whatever it is that consumes them — they can put things on hold to help a total stranger,” Klingberg said. “It’s profound. These donors can give someone a second chance at life that not even their own family can provide.”
Holden — the real superhero — won’t stop
“He has told us he wants to know that every child who needs one gets a donor,” Jamie said. “And he wants to be the one who makes sure that happens.”
Information from: Antigo Daily Journal, http://www.antigodailyjournal.com