Newsletters

Before Myles was born, his mother knew life would not be easy. He was already diagnosed with sickle cell disease when she was 5 months pregnant. At that time, doctors said his life expectancy could only be around 17 years, and he would have a very tough life filled with pain and many health complications. Sickle cell disease causes pain when misshapen red blood cells block blood flow, cutting off oxygen to tissues and triggering pain crises that can last hours or days. His mother put all her hope in medical advancements, hoping for a cure for his sickle cell disease.

Sickle cell disease forms Myles’ earliest memories; from taking medications to wailing in pain from a pain crisis in his mother’s arms. He was constantly in and out of the hospital, struggling with severe pain crises, daily medications, swollen hands, acute chest syndrome, asthma, blood transfusions twice a week, and eye issues. As a result, he spent his time isolated from the outside world and missed a lot of school. His disease put limits on his life. Myles could not be too hot or too cold and was unable to participate in any physical activities – no running, no playing soccer, no playing basketball with friends. “I have had so many scary and unpredictable moments. Life for me at times was sad.” Myles shared as a speaker at the 20th Valerie Fund Walk and 5K Run.

In early 2023, Myles was referred to Hackensack University Medical Center for a gene therapy trial by his Valerie Fund doctor, Dr. Jill Menell at The Valerie Fund Children’s Center at St. Joseph’s Medical Center. His stem cells were collected in July, and in December of the same year, Myles received a successful bone marrow transplant. He stayed in the hospital for 6 weeks and missed his junior year in high school due to his weakened immune system. Telling his story at the Walk & 5K Run, Myles said, “It was an extremely rough time, but well worth the struggle that came with it, being now free from pain crises or any major health issues. I’m so very happy to say I am now the best I’ve ever been and pain-free! It feels so good to finally enjoy life.” Myles is now giving back, mentoring sickle cell patients at his Valerie Fund Children’s Center and sharing his experience going through gene therapy to cure his sickle cell disease.

Myles will be attending Montclair State University in the fall with the assistance of a Valerie Fund Scholarship. Myles was cared for at The Valerie Fund Children’s Center at St. Joseph’s in Paterson since he was 2 months old. He loved playing with the Xbox in the center. As a child forced indoors for recreation, video games played a significant role in his childhood, providing him with a safe, indoor activity and an escape to an alternate reality. He will be attending college to learn video game design so he can provide an outlet for other children to cope with their disease.