Ja’Marrion Young: 2025 Riley Champion
“I play with my friends. I learn. We play outside. We play basketball.”
This fall is the first time Ja’Marrion Young has been able to attend any daycare or school. JaNyia Grundy beams as she listens to her son describe his day at pre-kindergarten. The journey to this ordinary day was long and painful in every sense.
JaNyia became connected with the cardiology team at Riley Children’s Health before Ja’Marrion was even born after doctors detected a hole in his heart. At 6 months old, he had to get diaphragmatic hernia surgery before he could get his heart repaired a week later. At the same time, Ja’Marrion was also diagnosed with sickle cell disease, the most common inherited blood disorder. Each surgery has required a collaborative plan between hematology, cardiology, pulmonology, anesthesia and surgery to give Ja’Marrion the best outcome because of how his diagnoses can impact each other.
Severe and intense pain is one of the most common complications of sickle cell disease and impacts every part of the body. Ja’Marrion has had to deal with pain his entire life, sometimes needing to be rushed from their home in Fort Wayne to Riley Hospital for Children in downtown Indianapolis.
“When he’s in pain, I feel so bad,” said JaNyia. “It makes me miserable. I wish I could take his pain away from him. Nobody should deal with that, and he’s so young.”
Seethal Jacob, M.D., director of Riley’s Comprehensive Pediatric Sickle Cell program, utilized her research on sickle cell telemedicine models to keep JaNyia and Ja’Marrion local to Fort Wayne early on. Ja’Marrion is a great example of the multi-specialty collaboration that happens at Riley Children’s to make care exceptional and convenient.
“We are very mindful of the extra burden that can be placed on families for children with chronic diseases like sickle cell when they live far from comprehensive subspecialty care,” said Dr. Jacob. “Our multidisciplinary program focuses on co-locating care as much as possible to make accessing medical care more convenient for our families. And for services that don’t happen in our clinic, we take the extra step to try to coordinate those for the same day.”
Inspired by Dr. Jacob to advocate for kids with sickle cell, JaNyia has hosted blood drives in Fort Wayne to help bring awareness to the disease.
“I never knew about sickle cell, and a lot of people around me never did either,” said JaNyia. “I’ve started talking about sickle cell around here, and we keep getting huge amount of turnouts at the blood drives.”
Ja’Marrion began receiving monthly blood transfusions this year. Aside from scheduled appointments, JaNyia says they haven’t had to visit the hospital during that time because of extreme pain. This allows Ja’Marrion to spend more time doing the things he enjoys: playing hoops, making people laugh and being the life of the party.
“Without Riley, I couldn’t have done it,” said JaNyia. “My son actually attends school now and can live a normal life like everybody else can.”