Deer Lakes student with rare genetic disorder searching for perfect bone marrow match

Caisen Bedillion is a typical teenage girl who loves cheerleading, roller coasters and horror movies.

The 13-year-old from West Deer, however, has endured an atypical amount of medical challenges.

“Since she was born, she had a number of medical problems and delays at every turn,” said her mom, Erin Bedillion. “For the longest time, we imagined she had bad luck. We would meet with specialists and address each symptom, and she’s always been such a trouper.

“She’s not one to get down about stuff.”

Diagnosed in February with a rare genetic disorder called dyskeratosis congenita, Caisen stands a significant risk of needing a lifesaving bone marrow transplant.

The rising eighth grader at East Union Intermediate Center is not in bone marrow failure, nor does she have blood cancer. But with the number of issues she is prone to, the majority will target her blood, Erin Bedillion said.

“The doctor tells us that bone marrow failure will happen,” she said.

The Deer Lakes community is coming together to raise awareness of NMDP, formerly known as the National Marrow Donor Program, and its Be the Match efforts.

NMDP organizes a diverse marrow registry donated from people around the world — 41 million in all — in hopes of providing bone marrow or cord blood transplants to patients in need.

According to the group’s website, 70% of patients who need a transplant don’t have a fully matched donor in their family.

In Caisen’s family, both of her brothers were swabbed for potential use of their tissue, but neither was a perfect match.

There also is not currently a 100% match in the national registry.

“Ideally, you want 100% because it gives the recipient much higher chances of success,” Erin Bedillion said.

Donors can join the registry with a simple cheek swab. Anyone interested can apply online for a registration kit that will be sent in the mail. The group prefers donors 18 to 41.

“We don’t need a match this second,” Erin Bedillion said. “But we’re going to do everything in our power to get a million more people to join this registry.”

Now is a window of great opportunity, she said, because there is time to search for a match for when it is needed.

In any given year, there are 12,000 people who need a donor from the registry and about 7,000 who are matched, Erin Bedillion said.

“That leaves 5,000 people who it gets complicated for,” she said.

Since 1987, NMDP has facilitated more than 120,000 transplants.

Jodi VanderSchaaff, principal at Caisen’s East Union Intermediate Center, said the opportunity is a teaching moment not only for her young students but for the community.

“I’m so glad the word about Caisen’s need for a match is being shared with the communities around us,” VanderSchaaff said. “We strive to teach our students about demonstrating kindness. And taking the steps to enroll in the Be the Match national registry is a great way to do just that.”

Erin Bedillion said she’s still learning about Caisen’s rare diagnosis — the genetic counselor used a 16-page PowerPoint presentation to explain it.

It falls under the umbrella of a disorder in which genetic mutations can cause premature shortening of telomeres, or structures made from DNA sequences and proteins found at the ends of chromosomes.

“The way they explained it is that if you take an X chromosome and the DNA is packed in there like spaghetti, there’s a cap to keep it all organized,” Erin Bedillion said. “The caps are the telomeres. They naturally wear away as we age, and when the strands sneak out, it causes chaos.

“Caisen’s caps are shortened because of this disease, and it will cause havoc sooner.”

Their only recourse is to keep a close eye on Caisen and treat any symptom that arises.

“There’s really nothing we can do but stare at her,” her mother said.

For all the mystery surrounding her daughter’s illness, the Be the Match registry could not be simpler, she said.

“I can’t believe how easy it is to possibly save someone’s life,” she said. “It couldn’t be easier.”

For details about the registry, visit bethematch.org.