NEW HAVEN – Five-year-old Jackie Erb loves to dress in her Wonder Woman outfit at the hospital with shield and sword in hand and tell her parents, “I’m kicking cancer’s butt.”

But Jackie needs a little more than that to finish the job.

She needs a bone marrow transplant and hasn’t been able to find a match, so through the organizations, “Be the Match,” and the “Icla da Silva Foundation” her family is partnering to hold a bone marrow drive Saturday in New Haven.

If a match isn’t found for this artistic, spunky and empathetic child, the samples will go into a registry and could result in saving another life. Jackie is the niece of Yale-New Haven Hospital physician Dr. Christopher Erb, who also is a clinical assistant professor at Yale University School of Medicine.

Jackie’s dad, Brian Erb, said his daughter suffers from a rare form of leukemia, juvenile myelomonocytic leukemia or JMML. While a bone marrow transplant is the only known potential cure, with a 50/50 survival rate, there is always a fear even then that the cancer could return

To add to the family’s stress, Brian Erb said Jackie’s twin sister, Addison, is said to have a good chance of developing the leukemia through a mutated gene she has and is showing signs of something in her blood work already. She is Jackie’s perfect match, but her bone marrow can’t be used because of her likelihood of developing JMML, which would likely only exacerbate Jackie’s condition.

What’s it like for a parent to be in this condition?

“Unimaginable, a living hell,” Brian Erb said. “It’s very rare (her leukemia) and they don’t have great treatment.”

Jackie has been in the Morristown Memorial Hospital for a few weeks now undergoing five days of chemotherapy to keep the cancer at bay while she awaits a match.

“She’s been overall doing really well. She’s a spunky little one,” Brian Erb said. “She hits us with her sword and says she’s kicking cancer’s butt.”

Brian Erb, a special education and biology teacher in New Jersey where they live, has had to take a leave from his job to rotate with Jackie’s mom, Lauren Gonnella staying in the hospital. So aside from the heartache, the family is suffering financially and if Jackie is lucky enough to find a match will be even more in need, because the family will have to move to Children’s Hospital of Philadelphia for a month and an additional two months near the hospital for regular monitoring.

Supporters have set up a GoFundMe page for the family.

The drive-through bone marrow event Saturday – which entails only a simple mouth swab – is being held by “Be the Match” and the “Icla da Silva Foundation,” at Elm City Montessori School & Friends Center for Children from 10 a.m. to 2 p.m.

People ages 18-44, and generally in good health, are invited to help by being a potential match for Jackie or others in need of bone marrow donors. COVID safety protocols will be observed.

In-person screening is preferable due to the urgent timeline and the short window in Jackie’s treatment plan, the drive organizers said.

Brian Erb said his daughter is, “artsy, silly, spunky, thoughtful, adventuresome,” and “very empathetic.” He said when it was his turn to go to the hospital to stay with her she was most concerned about her two sisters at home missing him.

He said she also loves learning and when it’s time for tutoring in the hospital she puts on her rainbow boots and bids goodbye to whichever parent is in the hospital with her.

Transplant News Sharing // “Bone Marrow Transplants” – Google News from Source www.nhregister.com

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