Diagnosed with Thalassemia Major when she was just 3 months old, Kristy De Rome Gober wasn’t expected to live past her teens.
“We were devastated,” said her father, Fury De Rome, 67, of Hughestown. “We slept under her crib every night.”
Soon, Fury and his wife, Mary, 66, began taking Kristy to Children’s Hospital of Philadelphia for frequent blood transfusions.
“In the beginning, we were there every week,” added Mary. “But as she got older, it was more spaced out.”
The genetic blood disorder, also known as Cooley’s Anemia, is mostly found in people of Mediterranean descent. The leading cause of death in people with this disorder is heart failure due to iron-overload from extensive, lifelong transfusions.
When she was 5 years old, Kristy began chelation therapy to help break up the iron in her blood.
“It was tough, trying to hold your 5-year-old child down to insert the infusion pump,” recalled Fury. “Thank God she’s here now,” Fury said during Sunday’s “Care Walk,” a fundraising event that Gober, now 36, organized to benefit Cooley’s Anemia Foundation.
More than 100 people attended the event held at the Hughestown Hose Company.
“I’ve overcome my odds and I feel like this a way to give back and find a cure,” said Gober, of Meshoppen. Participants showed support by walking laps around the track of the adjacent Robert Yaple Memorial Park. The event, which Gober also held last year, included a silent auction, music and food.
“We lost four dear friends this year (to the disease) so we are doing four laps around the track,” Gober said. “A lot of people aren’t aware of it,” she said of the disorder, adding that her parents are carriers and her sister, Jodi Eike, 42, also inherited the trait, but her condition is classified as “minor” and doesn’t require blood transfusions.
Gober still receives blood transfusions at CHOP every three to four weeks and endures nightly chelation therapy, lasting 12 hours.
“I have a good husband,” she said of her husband Paul, who makes sure she doesn’t miss her nightly treatments and takes time off of work to take her to Philadelphia.
“We’ve been married 11 years,” she said. “He’s a good man.”
Paul, 34, doesn’t mind the trips to Philadelphia, which he alternates with Fury, because he knows his wife is getting the best care.
“CHOP is rated number one in the country for treating this condition,” Paul said, adding Kristy’s positive outlook helps her get through it. “She has a great attitude, which makes it easy for everybody.”