Our inspiring patients are the reason the Cure Sickle Cell Walk & Family Fun Day was created and why we continue to strive to create breakthroughs for every child in our care. All donations benefit sickle cell research and patient care at Children’s Hospital of Philadelphia (CHOP). Thank you!
You’d never guess that just a week before this photo was taken, Enrique, 6, had his spleen removed. That’s just the kind of kid he is, says his father; energetic and full of life despite all he’s been through. Chronic pain crises have damaged his organs, he’s been hospitalized more than 20 times, and he has needed eight blood transfusions. Enrique’s family moved from Puerto Rico to Philadelphia two years ago and couldn’t be happier with the team they found in CHOP’s Sickle Cell Center. They are hopeful that future treatment advances will allow Enrique to one day live pain-free.
“It’s hard to see your kid in pain,” says Enrique Sr. “The treatments on the horizon will be life-changing. CHOP is our first priority in regards to my child’s health and well-being. This really was meant to be, him being part of this great family at the Sickle Cell Center.”
Growing up, Julius had a lot of pain crises. They would keep him out of school for weeks at a time. He watched movies and TV shows to distract himself from the pain. As a result, he became a big movie buff. By age 12, he knew he wanted to have a career in film or entertainment. Now 20, he is currently studying mass media production at Montgomery County Community College. He still misses school from time to time, but a lot less frequently. Since starting a trial of a monthly medication injection, his pain crises have decreased in intensity and frequency, from three a month to one a month.
“It makes me really hopeful for the future and for people like my little sister, who also has sickle cell,” says Julius. “The team at CHOP has been really helpful. They understand sickle cell better than a lot of other places I’ve been. They know what I need, and what the symptoms are and the best way to treat them.”
Montana’s favorite things about third grade are reading and recess. She also loves dancing and listening to music. Like most individuals with sickle cell disease, she has increased sensitivity to cold and heat. Sudden changes in temperature can set off a pain crisis for her. Montana once had a pain crisis so bad she couldn’t walk, and at age 4, she was hospitalized for a week with acute chest syndrome. “It’s hard,” says her mother, Nadine. “When she’s sick, I wish I could take it away from her.” Now 8, Montana takes medicine every day to keep the illness in check, and she has follow-up appointments at CHOP every three months. Despite her health struggles and frequent doctor visits, Montana sees herself as a normal kid. “I don’t think she knows how serious it is,” says Nadine. Montana is excited to be a Sickle Cell Walk ambassador.
When Sarah isn’t studying neuroscience at the University of Pennsylvania and preparing for medical school, she volunteers as an on-campus EMT and helps with cystic fibrosis research at CHOP. She recently traveled to China for winter break to learn about Eastern medicine. Her peers and others who meet her would never guess that she has been in and out of the hospital her whole life because of sickle cell disease. She recently developed hip pain from avascular necrosis, a complication of the disease that can result in collapse of the bone. But Sarah, 21, doesn’t let it stop her. “I’ve learned to understand my body and adapt,” she says. She recently started a clinical trial for a monthly infusion drug and looks forward to a day when she doesn’t always have to think about her health.
Temitope (Temi, for short) has experienced pain crises since she was 9 months old. At age 10, she was diagnosed with avascular necrosis, a painful complication of sickle cell disease that causes bone to collapse. At times, the pain has prevented her from walking, going to school and participating in her favorite sport: synchronized swimming. In fall 2019, Temi was the first CHOP patient with sickle cell disease to participate in a clinical trial of gene therapy. She hasn’t been hospitalized since she was discharged in the fall and has more energy than ever. “It’s exciting,” says Temi, 13, of the trial. “My whole life has revolved around me having sickle cell disease. It would be cool to not have it.”
“It’s our hope to remain involved with the community, even if she doesn’t suffer symptoms anymore,” says Temi’s mom, Mary. “We will remain committed to this cause to see that the chance she got is available to other kids.”
Zion is a fun, outgoing kid. He and his younger sister, Zuri, both have sickle cell disease and have been CHOP patients since birth. Zion loves playing football and swimming in the summertime. He has to be careful not to over-exert himself or experience sudden temperature changes, as it can bring on a severe sickle cell pain episode in his hips, legs and/or arms. He often suffers through the pain in silence until he can’t endure it anymore, says his mom, Shirldaya, because he doesn’t want to miss school and hanging out with his friends. “He’s very determined,” says Shirldaya. “He doesn’t let anything stand in his way.” Last year, Zion, 10, lost hearing in his right ear as a result of sickle cell disease. His mom is excited for the possibility of a treatment breakthrough that could help her kids live long, pain-free lives.
Zuri, 3, is a little girl with a big personality. Her favorite things to do are go to church on Sunday with her family, play with her Barbie dolls, and play with her cousin Jada and her older brother, Zion, who also has sickle cell disease. Zuri has had a lot of health issues in her short life, including breathing issues after birth, an enlarged spleen at age 2, and pain crises. She and her brother have both been hospitalized for acute chest syndrome, a life-threatening complication of sickle cell disease.
“Even a little fever can go from small to serious,” says her mom, Shirldaya. “It can be life or death. So, I’m always fast to react. Whenever the kids say something’s wrong, I have to think it could be the worst-case scenario, because you never know.”