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Under New Nonprofit, Parents Continue The Legacy Of Phoebe Ward

Zach Sparks
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September 7, 2017

Second Memorial Run Set For October 8

Phoebe Jeong-Hui Ward savored plenty of memorable moments in her nine years. She was invited to a behind-the-scenes tour at the Maryland Zoo as a reward for persuading her parents to “adopt” an African penguin, she sparred in a taekwondo competition and she demonstrated her taekwondo skills for the Disney princess Mulan during her fourth trip to Disney World.

Because Phoebe lost her battle to hemophagocytic lymphohistiocytosis (HLH) in February 2016, there are plenty of memorable moments she did not see: benches at Severna Park Elementary School and the Maryland Zoo named in her honor, more than 300 people joining the Be The Match bone marrow registry in her name, and 300 runners congregating on the B&A Trail for the inaugural 5K that was organized by her friend Colm O’Connor and his mom, Monica, in September 2016.

“She would have loved it,” said Phoebe’s father, Dave Ward. “She loved being the center of attention; what 9-year-old girl doesn’t, I guess! She was always appreciative of things people did for her. When she was in the hospital, a lot of people, like her class and her cheerleading group, sent her things: posters, pictures, etc. She always liked that. I think it helped keep her motivated early on when she was first hospitalized.”

Parents Dave and Britta Ward announced in August that Fight For Phoebe Inc. was officially incorporated as a tax-exempt nonprofit organization.

“We want to raise awareness about orphan diseases, help other families that might need to travel [for medical care], and reach out to partner organizations,” Britta said of the nonprofit’s goals.

As their first endeavor, the Wards are welcoming the community to join them at Severna Park Elementary and then the B&A Trail for the second annual Fight For Phoebe Memorial Run on Sunday, October 8.

“Monica and Colm did a great job last year, even though it was an overwhelming amount to handle,” Dave said.

“This year, we want the run to be a bit bigger, step it up so it’s more competitive,” Britta concluded.

In addition to the fun run/walk at 8:30am, this year’s event will include a competitive run at 8:00am. Also new this year is online registration.

Funds will go to Hospice of the Chesapeake’s Chesapeake Kids program and the Matthew and Andrew Akin Foundation, which seeks to provide HLH education on treatment and research trials, assist families in transferring their kids’ care to the renowned experts at Cincinnati Children’s Hospital Medical Center, and inspire others by hosting and organizing events.

Britta explained that Hospice of the Chesapeake was especially helpful during the Ward family’s grieving process. Last year, Britta and Dave’s son, Camden, participated in Phoenix Rising, a weekend retreat for teens that explores coping strategies through team-building activities.

“Even if people don’t go through Hospice or make use of the Hospice program before people pass away, they can still make use of the counseling services, and not a lot of people know that,” Britta explained.

Also important is bringing awareness to orphan diseases, which are defined by the U.S. Food and Drug Administration as diseases affecting less than 200,000 people nationwide. Phoebe’s condition, HLH, is caused by blood cells attacking other blood cells, causing damage to organs.

“If it affects 200,000 people, it’s an orphan disease, but there are so many orphan diseases,” Dave said. “If all people with orphan diseases lived in one country, it would be the third most populous country in the world.”

Orphan diseases can be difficult to diagnose. “The diagnosis is almost done by process of elimination,” Britta said. “By reading, families might think their child has HLH, but they don’t know. Every case is different.”

Dave added, “The doctors thought Phoebe had mono. It took three weeks, and even then they weren’t certain [she had HLH], so it’s a serious issue.”

As they look forward to spreading awareness and holding the memorial run, the Wards hope to eventually start a scholarship program in Phoebe’s name. Many logistics need to be determined before that vision becomes a reality, but the parents are, in some small way, happy that they can make an impact in honor of Phoebe.

“You never really get past it,” Dave said. “Even now, if I have to put a picture of Phoebe on the Facebook page, it gets to me and I might have to stop for a minute. For me, having something to do helps. I hope this is giving back.”

Registration for the event is available by searching for “Fight For Phoebe Memorial Run” at www.active.com. For the competitive run, the cost is $35. The fun run requires the following donations: $15 for participants ages 7-17, $30 for those over 18, or $50 for a team. Kids 6 and under can partake for free. More information can be found on the “Fight For Phoebe” Facebook page and www.fightforphoebe.com.

Donors between the ages of 18 and 44 can join the Be The Match bone marrow registry in Phoebe’s honor – and provide a potential cure for people with leukemia, lymphoma and other diseases – by visiting http://join.bethematch.org/fightforphoebe.

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