Most families look forward to the holiday season. But for the Caven family of Coral Springs, the fall and winter months have typically been a time of dread. Their 10-year-old daughter Devyn, who was diagnosed with sickle cell anemia as an infant, has spent too many holiday seasons and hundreds of other days throughout the years lying in a hospital bed surrounded by nurses and monitors. But those times are past, thanks to a breakthrough procedure available at Miami Children’s Hospital that offers children with sickle cell anemia a chance for a cure.
A Difficult Childhood
Devyn’s genetic blood disorder, which causes red blood cells to change shape, is associated with an array of serious complications, including episodes of chronic pain, increased infections and bone damage. She was particularly vulnerable to complications during the fall and winter flu season. By age 4, Devyn had already battled such life threatening ailments as pneumonia, respiratory syncitial virus (RSV) and acute chest syndrome (ACS), which often causes death in children with sickle cell disease.
When Devyn started having strokes two years ago, it looked as if her holidays would forever be spent in the company of caregivers—if she even lived to see her teenage years. Only this time her parents were given hope when a neurologist told them that a bone marrow transplant, once reserved exclusively for leukemia patients, could offer a cure for sickle cell anemia.
A Second Chance
“We were living in Atlanta at the time, but we wanted the best possible care for Devyn,” says Cecile Caven, Devyn’s mom. “So we moved to Miami in hopes of getting a bone marrow transplant at Miami Children’s Hospital.” The next step was to find someone whose stem cells were compatible with Devyn’s. After each family member was tested, one was determined to be the perfect match—her 7-year-old sister, Danielle.
“We explained to Danielle that she could help Devyn by donating some of her stem cells,” Cecile says. “Danielle was absolutely ecstatic to know she could do something so that her sister wouldn’t have to live with sickle cell anymore.”
John Fort, MD, Director of the Bone Marrow Transplant Program at Miami Children’s—the only freestanding pediatric hospital in Florida accredited by the Foundation for the Accreditation of Cellular Therapy (FACT) to perform this innovative procedure for children— explains that unlike most sickle cell patients, Devyn was fortunate that she
had Danielle to donate the lifesaving stem cells.
“We wanted Devyn to have a healthy life,” Dr. Fort says, “and having a family member as the donor significantly increases her chances of being cured.”
Devyn’s procedure was in April 2003, and she has successfully completed her recovery process. Devyn can now play with Danielle and is keeping up with her fourth grade studies through Broward County’s Hospital Homebound program. To her, the best part about having the transplant is the fact that “I can laugh a lot more now!”
“She has more energy than she ever has,” Cecile says. “For the first time, my child actually has a chance to live a normal life. There aren’t words to express our gratitude for
Dr. Fort and all of the doctors, nurses and social workers at Miami Children’s Hospital.”
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- Bone Marrow Transplant Patient Success Stories
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