After their three-year-old receives three bone marrow transplants, one family receives a much-needed lift from a patient assistance grant.
Just days after his second birthday, Jordan was diagnosed with chronic granulomatous disease. His best chance for a cure was a bone marrow transplant.
Fortunately, his donor match was found on the Be The Match Registry® and Jordan received his first bone marrow transplant in March 2020—the same day COVID-19 restrictions took effect. Not only did the pandemic limit visitors for Jordan, it ultimately made it impossible for his mom, Jodi, to continue working and stay by his side while he was in the hospital.
Jordan’s bone marrow transplant recovery did not go as smoothly as hoped. “On day 52 after Jordan’s transplant, he was hospitalized with a virus that caused him to lose his engraftment,” shared Jodi. “His blood counts were never able to recover.” This meant Jordan would need another transplant. Remarkably, his same donor agreed to donate bone marrow for a second time and Jordan received his second transplant in August 2020.
A little lift
Even though Jodi’s work stopped, the family’s expenses did not. They had expenses related to transplant that weren’t covered by insurance, such as prescription co-pays and temporary lodging costs since they were required to stay near the transplant center.
But thanks to the Harper Family Patient Assistance Fund, Jordan’s family was able to receive a grant to help with some of the added expenses. “This grant has helped our family so much—with me not being able to work, and the increase in out-of-pocket expenses we’re spending on medications for Jordan, and the cost of living away from home while still trying to keep up with our own home,” says Jodi.
Unfortunately, Jordan’s second transplant also failed. And at just three years old, Jordan was in need of a third transplant. This time, Jodi’s cells would be taken and prepared for Jordan as a haplo-identical, or half-matched, transplant. In December of 2020, Jordan received his third transplant.
Road to recovery
Today, Jordan is doing well as he continues his journey toward healing. After spending more than a year away from home, he was finally able to go home March 12 and he’s catching up on precious time with his sister and cousins. Reaching another significant milestone, Jordan officially had his PICC line removed after 420 days. And this summer, he’s looking forward to swimming as much as possible with friends and family, mowing the grass and riding his bike—all the things he missed out on last summer.
Jodi is very grateful for the patient assistance grant she received from Be The Match® funded solely through philanthropy. “Thank you so much to the donors who have made these grants possible to relieve some of the burden, so we are able to focus all of our attention on Jordan getting healthy again.”
If you’d like to help relieve some of the financial burden for families like Jordan’s so they too can focus on their transplant-patient loved one, please make a gift today.