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Now cured, Ryan is able to pursue his passions

Ryan P. attends The Valerie Fund’s Walk & 5K Run with his team Ryan’s Power Pack to connect with the community and give back to The Valerie Fund. You may have seen him on TV with John Elliott, talking about his Valerie Fund Experience. That is because Ryan has a different story to tell.

Diagnosed with sickle cell disease at birth, among Ryan’s first memories of being in a Valerie Fund Children’s Center is a visit from mascot Captain Hope. At that time, the idea of hope resonated with him. Now, as a 17-year-old young adult, Ryan is a real-world Captain Hope for the sickle cell community, having successfully undergone a bone marrow transplant and is now cured of sickle cell disease. He still carries the gene but no longer suffers from the debilitating, life-threatening pain crises.

Ryan’s mother, Robin, describes The Valerie Fund Children’s Centers as very welcoming. Walking through the door into The Valerie Fund Center was something Ryan understood he had to do to survive, to get a blood transfusion, but he was never excited to go. As he says, “No one likes to get poked, but the people at the center helped make it okay. Everyone was very comforting, and I never felt uncomfortable in the chair getting the transfusion because I knew the people around me cared and would help me get better.”

He spent many hours in the playrooms of the different Valerie Fund Centers – at St. Barnabas, Atlantic Health’s Goryeb Children’s Hospital in Morristown, and at Newark Beth Israel under the care of Dr. Narang. Now cured, Ryan misses the beautiful people who made him feel comfortable in that environment. That is, in part, why he attends The Valerie Fund Walk & 5K Run Presented by Ed & Sue Goldstein and JAG Physical Therapy.

Ryan was hospitalized frequently to deal with the pain crises that arise from sickle cell disease. With sickle cell disease, blood cells sickle and clump together to block off blood flow and cause pain. The most grave issue came when Ryan was 7 years old. Ryan remembers being in the ambulance but not much else. Mom, Robin recounts how Ryan came home from school. It was a normal day, and then a pain crisis started. Within 20 minutes, it escalated to him screaming in pain. In the ambulance, he was in too much pain to lie flat, so she had to hold him on her lap. Upon arriving at the hospital, the clot had moved up to his lungs. Ryan was in upper respiratory failure and needed to be transferred to New York Presbyterian Hospital. The team from NY Presbyterian prepared his family, warning them Ryan could lose his life if they couldn’t get him over the George Washington Bridge fast enough because of traffic and the portable respirator. Ryan made it over the bridge to the hospital and was put into a coma for treatment. 

There are two curative procedures for sickle cell disease: gene therapy and a bone marrow transplant. Ryan was not a candidate for gene therapy. With sickle cell patients, the bone marrow can only come from siblings, as opposed to cancer patients, where the donor can come off a national list. Ryan’s two older siblings were tested, and with only a 15% likelihood, his eldest brother was a 100% match.

Ryan chose to move forward with the transplant. In October 2019, two months into 7th grade, Ryan left his classroom to begin the transplant with the port placement. Ryan’s memories of this time focus on his experience of being in the hospital for an extended period and the isolation he had to endure. The only faces he could see were his own family. He couldn’t be touched since his immune system was being broken down with the chemotherapy.

Ryan’s educational liaison, Joann Spera set him up with a Vigo robot system so he could participate in school activities through an iPad in his hospital bed that connected with a robot in the classroom. Ryan shared, “Giving a child an opportunity, despite being bedridden, to experience school and social life is something that has my heart forever. Joann was a beautiful soul. She always made sure I was right and okay and that my parents were as well.”

Ryan is 100% cured, with no trace of sickle cell disease. Although he no longer needs to go to The Valerie Fund Children’s Center, he attends the Walk to be a part of the community that made him better and a part of “who I am.” The Valerie Fund Children’s Center caregivers are still a part of their lives; they call and check on Ryan and send messages.

Now, Ryan is a happy, outgoing, caring, and energetic 17-year-old who likes school, performing in his high school musicals, attending Broadway musicals and camp, and being with friends and family. He enjoys traveling, playing his Instruments, bike riding, gaming, The Power Rangers, and Legos.

He is blessed and living his best life…sickle cell FREE!!