Though the Witkin family’s story is a heartbreakingly hopeful one, Lisa Witkin says that theirs is “not any unique case.”
Her son, Andrew Witkin, 15, was born with a rare blood disorder and needs to find a bone marrow donor match to fight his ailing health.
“But there are many children, as well as adults, who need bone marrow transplants,” Witkin said. In the United States alone, 6,000 people search the donor list each day for a donor match, according to DKMS, the largest bone marrow donor center in the world.
And if you are between the ages of 18 and 55, and in generally good health, you could be the match one of them is looking for.
From 10 a.m. to 2 p.m. Saturday Aug. 22 the St. Charles Borromeo Church at 417 S. Orchard St. in Syracuse will host a bone marrow donor registration drive, where people can sign up to be a potential donor. The process requires a swab of the inner cheek to collect a tissue sample and the completion of a registration form.
Organized by the Geddes Baseball Moms Committee, the drive is in honor of Andrew, who will start his freshman year at Westhill High School in the fall, though anyone who registers Saturday to donate will be placed on the largest national bone marrow registry and become eligible to donate to any potential match.
Tammy Carter-Kinney, one of the mothers who established the committee, said one of the great things about the drive is that it might help find Andrew a match but would also make more donors available to the national registry.
“It’s just about doing the right thing,” Carter-Kinney said.
The A-Team
Andrew is like most teenage boys. He loves sports, especially baseball, and just wants to fit in. But unlike most high schoolers, Andrew has spent his entire life battling a rare blood disease. He was diagnosed with Severe Congenital Neutrapenia as a baby, a disorder that prevents him from creating the type of white blood cell important in fighting infection.
Carter-Kinney said her son Matthew, 14, and Andrew have been friends since the first grade and have played together in the Geddes Little League. She and Witkin and the other moms had all gotten to know each other while sitting watching the games.
“I know these ladies because all our sons play on the same baseball team,” Witkin said. “We sit on the sidelines and talk about everything. They knew Andrew was struggling. They know what we’ve been through.”
But until last fall, Carter-Kinney said, if they hadn’t known Andrew was sick, they couldn’t have guessed.
“He is a happy-go-lucky kid and has taken everything in stride,” Carter-Kinney said. Then Andrew started missing school and even baseball games. “Andrew would never miss a game. We knew something was really wrong,” she added.
When word got out that Andrew’s health had declined, the baseball moms sprung into action.
“Chris [Dwyer] just turned to me and said, ‘can’t we do something?'” Carter-Kinney remembered.
Soon after, Carter-Kinney, Dwyer, Witkin, and Tori Albright, Eileen Nealon and Nancy Carter established the Geddes Baseball Moms Committee, which Andrew calls the “A-Team.”
Their main purpose has been to organize the drive and raise awareness of the need, Carter-Kinney said.
A serious commitment
Witkin said she and her husband, Jerome, have both been registered as donors since Andrew was a child, and they certainly hope more people will be inspired to register to donate.
But if someone is only casually interested in the idea, there are other ways to support the cause. The Aug. 22 event will also feature raffles, entertainment and a bake sale – and monetary donations are always welcome.
Witkin said that people should really be aware of all the details before registering to donate, and know that if they are not comfortable donating, it’s OK.
“You can go to this drive and go through the line, and it would maybe take ten minutes to register,” Witkin said. “But you are signing up and seriously committing to helping someone out. Depending on your age, literally for the next 40 years you’re on that list, and saying you would stand up and be available.”
Witkin emphasized the commitment a registered donor makes with a simple sign-up. Deciding later not to donate – after a match has been made – could be devastating to someone in need of a transplant.
But committing to donating could ultimately be one of the most satisfying experiences in your life.
The donation process
Registering donors are entered into the national registry. If an initial match is made, potential donors are required to participate in a series of exams and tests to determine whether their marrow is truly a match for the patient. Though donors never pay to donate, they may be required to take time off from work to undergo the testing and procedure.
Unlike donating an organ for transplant, sharing your bone marrow or peripheral blood stem cells is most often an outpatient procedure and recovery time usually ranges from a few days to a week.
Bone marrow extraction is a surgical procedure. Donors are anesthetized while a doctor uses hollow needs to extract the liquid bone marrow directly from the pelvic bone. Following the procedure most patients experience lower back soreness for a few days, or nausea, sore throat and lightheadness from the anethesia, but are able to maintain normal activities without disruption.
Donating peripheral blood stem cells is almost as simple as donating blood. Donors receive a daily injection for four days prior to the donation to increase white blood cell production??. Then, through a process called apherisis, the donor’s blood is removed through one arm, run through a machine that collects the white blood cells, then replaced into the donor’s body through the other arm. Pre-donation, patients may experience headaches, muscle or bone ache, but shortly after donation the aches go away.
Registering with DKMS will make you eligible for either procedure.
For more information about DKMS, the registration and donation process, or to read about other people’s experiences, visit DKMSAmericas.org.
Want to help out with the bake sale?
If you are a baker, or just want to contribute baked goods to the bake sale, contact Patty Searle at [email protected]. Baked goods to be donated for the sale need to be collected by noon Friday, Aug. 21.
