With Memorial 5K, Severna Park Residents Get A Running Start On Plans To Honor Phoebe Ward

Often described as “a bundle of energy” by family and friends, Phoebe Jeong-Hui Ward was hard to bore. She loved basketball, taekwondo, kayaking, cheerleading with the Green Hornets, and penguins. But after being diagnosed with the life-threatening immunodeficiency hemophagocytic lymphohistiocytosis (HLH) and making a home at Children’s National Medical Center in Washington, D.C., the activity that became most sacred to her was spending time with family.

“She missed us all, especially her brother Camden and her dog Baci,” said Dave Ward, Phoebe’s dad. “[Phoebe’s mom], Britta, didn't leave the hospital at all, and it comforted Phoebe. I went every day after work or sometimes all day if there was something major happening (surgery, etc). Being in a hospital so long is scary for anyone, especially an 8-year-old girl.”

With HLH, too many infection-fighting cells are produced and activated, causing damage to organs. For Phoebe to overcome HLH, she would need a bone marrow transplant.

While Phoebe fought the disease from Children’s National Medical Center, with Britta at her side and Dave shuffling between Severna Park and Washington, D.C., Severna Park residents arranged swabbing events for Be the Match, a nonprofit that has a registry linking patients with bone marrow donors.

In early November, Phoebe suffered seizures, pneumonia and a collapsed lung. After a five-month battle that began in September, the family learned that Phoebe would not survive a bone marrow transplant, and even if she did, she would never be able to live, communicate, or function independently.

“There is no cure for the disease,” Dave said. “It's treated with steroids and some chemotherapy drugs, but if one has the primary (familial) form, then the best that they can do is keep the disease at bay. The only solution is for a bone marrow transplant, which can be brutal in its own right. The setbacks that Phoebe experienced significantly weakened her, ultimately preventing this.”

Phoebe was brought to her Severna Park home under hospice care in January 2016. She lost her battle with HLH in February. Phoebe was 9 years old.

RUNNING FOR PHOEBE

Moved by the death of his neighbor and friend, Severna Park Middle School seventh-grader Colm O’Connor insisted that a memorial run be held in her honor.

“I just thought it would be a good idea to raise money and awareness in the community, and it would be even more fun for the little kids,” said Colm, who remembers Phoebe for her playful spirit and “jostling around with her friend Emmy,” who, with Phoebe, engaged in Nerf wars.

Monica O’Connor, Colm’s mom, knew the Ward family, but it was through Colm’s persistence that she agreed to help plan the event.

“We were all really touched in the community by Phoebe’s death,” Monica said. “I was extra touched by Dave and Britta’s willingness to share what they were going through. Colm was compelled to do something for her and the Ward family because he was kind of allowed to go through that grieving process with them, and as a parent, that touched me.”

Anne Arundel County residents will congregate at Severna Park Elementary and set off on the B&A Trail for the rain-or-shine 5K fun run and walk on Sunday, September 18, from 6:30am to noon. The event is especially timely since September is Histiocytosis Awareness Month (histiocytosis comprises the group of syndromes to which HLH belongs).

Funds will benefit the Matthew & Andrew Akin Foundation, which raises money for education, awareness and assisting families that want to transfer their care to the renowned experts at Cincinnati Children’s Medical Center.

“HLH is what they consider an orphan disease,” Dave said. “It’s rare, so there is no federal funding or very little federal funding. When you lose a child, it’s not so rare anymore.”

Because the disease is rare, not every child gets the care he or she needs, which is why the Wards pegged the Matthew & Andrew Akin Foundation as the beneficiary of the event.

“Many children and adults, because adults can get it too, are in an area where doctors aren’t familiar with HLH,” Dave said. “There are so many nuances with this disease. I always thought diagnosing something was procedural. You have this symptom so you have this disease, or you have this symptom. With HLH, there are so many twists and turns.”

Not having as many twists and turns is the memorial run. Monica said the event has not been widely advertised outside of the Olde Severna Park community newsletter and Severna Park Elementary, because the original intent was to give the event an intimate feel. But, since announcing the run, attendance has burgeoned, and they don’t want to shun anyone who was a part of Phoebe’s journey.

The Wards are grateful to the O’Connors and those who helped while Phoebe was fighting for her life. Jen Callaway, Erin Keefer and Stephanie Wright are among the friends who organized swabbing events and established a GoFundMe account that raised more than $27,000 for medical bills.

Dave is also thankful that the Maryland Zoo, which, in conjunction with the Marty Lyons Foundation, named a bench in Phoebe’s honor.

Phoebe’s legacy will continue to endure, not only with the memorial 5K but also with bone marrow donations. A donor who registered with Be the Match in Phoebe’s name was recently identified as a possible match for someone in need.

Overall, the Fight for Phoebe movement brought attention to the need for more minority candidates on the donor registry. According to Aimee Haskew, a community engagement representative with Be the Match, more than 300 people joined the Be The Match registry in honor of Phoebe. Of those 300 people, 153 joined at swab events hosted at local churches and other venues, and 150 joined online (a swab kit was mailed to them) via Phoebe’s special link. Phoebe’s link is still active should anyone wish to join the registry in her honor (https://join.bethematch.org/FightForPhoebe). Preregistration for the 5K fun run and walk is $10 per individual or $25 per family. Race-day registration is $15 per individual or $35 per family. For more information, contact moconnor121@verizon.net or sign up using the “Fight for Phoebe” Facebook page.

“I like the thought of spending time thinking of Phoebe, and anytime we do this run, we will think of Phoebe,” Monica said.