Friends Launch “Fight For Phoebe” Campaign To Save Severna Park Girl

Phoebe Jeong-Hui Ward’s journey took her to an unexpected place when she was adopted at 8 months old by the Ward family from Severna Park. Coming from South Korea, Phoebe fell in love with American culture. Now, the 8-year-old faces another unexpected journey: a fight against hemophagocytic lymphohistiocytosis (HLH), a life-threatening immunodeficiency.

Phoebe is a Green Hornets cheerleader, basketball and lacrosse player, and a black tip in taekwondo. “But what makes her special is how much she cares about others,” revealed her father, Dave Ward. “She loves helping others in her class. This summer, her and her friend decided to do a lemonade stand and they organized it themselves. We thought it was cute, but they had seen something about Alex’s Lemonade Stand (the charity) and decided to do something to raise money for it.”

Those interests were put on hold when Phoebe was diagnosed with HLH, which is caused when the cells of the immune system stop destroying infected or damaged cells and instead damage tissues and organs. The condition was discovered during a visit to Children’s National Medical Center in Washington, D.C., in September.

“It started pretty innocuously — she was very tired the week school started,” Dave recalled. “We didn’t think anything of it, but then the next week, she developed a fever. Initial diagnosis was that it was mono or a mono-like virus. But after four days, she wasn’t getting any better and they always say, ‘you know your child best,’ so we took her to the ER at Anne Arundel Medical Center. They ran some tests, saw some anomalies and transferred her to Children’s [National Medical Center].”

A third-grader at Severna Park Elementary, Phoebe has been away from school while receiving chemotherapy. She is also waiting for a potentially lifesaving bone marrow transplant.

“Phoebe’s a brave girl for sure,” Dave said. “She knows she has HLH, and that it is very serious. She has also had several surgeries already and has regular treatments that require anesthesia. She has yet to cry about any of that.”

As Dave shuffles from Washington, D.C., to Severna Park and Phoebe’s mom, Severna Park Elementary kindergarten teacher Britta Osborne-Ward, stays with her daughter, friends have formed a Fight For Phoebe group to find potential bone marrow donors. Leading Fight For Phoebe is Olde Severna Park resident Stephanie Wright and family friends Jen Callaway and Erin Keefer.

“When something happens like this, it really brings the community together,” Keefer remarked. “We live in a small town, and I think Severna Park is unique in that word travels fast.”

Callaway said the community is one reason supporters are so optimistic about Phoebe’s chances for recovery. “Whether it’s coaching youth sports, volunteering in school or girl scouts, there are many parents willing to step up and work with our kids,” she said. “When one of our kids faces such a traumatic situation, we have to reach out to help each other. Friends, family, neighbors, teachers and the entire community are really rallying around the Wards during this time.”

As determined as the volunteers have been, they need help. Since Phoebe is from Korea, she likely needs an Asian match, which is challenging since minorities are underrepresented on the bone marrow registry. Friends are working with the nonprofit organization Be the Match to schedule swabbing events throughout Maryland, Virginia and Washington, D.C., focusing on churches and other areas where Korean families may serve as donors.

Aimee Haskew, a community engagement representative with Be the Match, explained that bone marrow transplants require a matching HLA tissue type, a process more complicated than matching blood types. She also noted that the marrow has to be replaced.

“Think of marrow like a car factory,” Haskew explained. “Something on the assembly line is going wrong, so you have to destroy the factory and build a new one.”

Haskew and the coalition of volunteers that make up Fight For Phoebe also want people to know that the donation process is simple. “It’s a bruise,” Keefer acknowledged. “You can go back to work the next day.”

Donors must be between the ages of 18 and 44 and in good health. There is a cheek swab, but no needles are involved. After a person is added to the registry, they may become matches not just for Phoebe but also for anyone in need of a bone marrow transplant, which is a potential cure for patients with leukemia, lymphoma, sickle cell anemia and many other diseases.

Phoebe hopes to receive one of those transplants, and her outlook will be decided from there. “HLH is a very rare disease, and every patient’s recovery from it seems to differ,” Dave said. “We just have to accept that there will be good days and bad days.”

Fight For Phoebe held a kickoff event at Woods Church on October 31, and on October 30, Severna Park Elementary supported the cause with a trick-or-trot in which kids gained pledges from friends and family before parading around the playground in their Halloween costumes.

To stay updated on upcoming events, visit the “Fight For Phoebe” Facebook page or www.phobesfight.blogspot.com. Questions about volunteering can be sent to forphoebeward@gmail.com. To join the Be the Match registry in Phoebe’s honor, go to http://join.bethematch.org/FightForPhoebe.