Princess Matlock was diagnosed with sickle cell disease when she was just a tiny infant. Today at 24, she’s transitioning out of pediatric care at the Children’s Blood & Cancer Center (CBCC) to adult care. Her delightful presence will continue to be felt in the CBCC, where she volunteers regularly to support younger kids living with the disease.
The early years of Princess’ illness were difficult, says her mother, Pamela Filip. Princess was the first person in her family to be diagnosed with sickle cell disease, and they faced a frightening journey. When Princess was four, she suffered a massive stroke. One year later, a second stroke followed.
“Princess took lots of medications and underwent two total blood transfusions,” says Pamela. “She’s been getting monthly blood transfusions since age four. Colds or viruses can quickly turn into illness, so she has to be extra careful.”
As they learned more about the disease, says Pamela, things became easier. The CBCC staff supported and educated her family. They met other families going through the same situation, and they connected with supportive community organizations that support children with sickle cell disease. They realized they were not alone.
“After meeting other parents, the strength that we all possess is amazing“, says Pamela. “We felt we were all in it together. The outpouring of love from others, that alone is a healer.”
Pamela has always found it difficult to watch Princess tire quickly or miss out in activities with other children, but she says her daughter has been blessed. “Many sickle cell children go through severe pain, but Princess has never really experienced a pain crisis.”
Recently Princess was trained as a Dell Children’s volunteer and has become a role model for younger patients with the disease. Patients connect with and look up to Princess because she understands intimately the challenges of living with chronic illness. She loves to bring toys and magazines to kids as they undergo treatments, as well as volunteer for special CBCC events like summer camp and prom. She’s become an ambassador for Hungry Bunch, the CBCC teen support group, and always encourages patients to join.
Cindy Fitchpatrick is the CBCC psychosocial program coordinator and says Princess has become a reliable volunteer and a wonderful friend to many patients. “Princess does a great job of helping new Hungry Bunch members feel welcome,” she says. “She’ll hang out with someone who is sitting by themselves. She is very good at making sure everyone is comfortable and having a good time.”
Despite her illness, Princess lives a full life. She is a jewelry maker and loves her work. She enjoys going to church, being with her family, and shopping at the mall. She loves to smile and makes the best of each day. “I have a lot of family supporting me, and I have the CBCC team behind me. The nurses and doctors are special. I feel a lot of love!“