Rosie the rock star
It takes a special child to remain cheerful in the face of a life-threatening disease. But 5-year-old Rosie has little time for self-pity, despite her daily battle with neurofibromatosis, which has resulted in an inoperable brain tumor and more than a half dozen chronic conditions. She’s too busy raising money for pediatric research and collecting toys for the kids treated at Children’s Memorial Hospital.
Rosie’s parents, JoAnne and Mark, founded Research for Rosie Charities, Inc. to support neurofibromatosis (NF) and brain tumor research and education. Their efforts support Children’s Memorial, where Rosie receives coordinated care from a multidisciplinary team of specialists, the Children’s Tumor Foundation and others. Rosie even has her own “Research for Rosie” business cards, which she hands out to people she meets.
“Rosie has inspired so many people,” says JoAnne. “Even though she’s been through more than most people experience in a lifetime, what she really enjoys is helping others. She amazes us every day with her incredible spirit.”
Rosie, who calls herself “Rosie the Rock Star,” was diagnosed on her third birthday with NF1, a complex genetic disorder affecting the skin and nervous system, which occurs in one out of every 3,000 births. Children with NF1 are at risk for serious complications throughout their lives. They often develop tumors of the nervous system, which can occur on both the peripheral nerves on the skin and inside the body, and may become disfiguring. The disorder can also cause skeletal abnormalities and contribute to cognitive and learning disabilities.
Rosie is followed at Children’s Memorial’s Neurofibromatosis Clinic by Robert H. Listernick, MD, director of the clinic and one of the world’s leading authorities on care for children with NF1. The clinic sees more than 1,000 children each year with NF1 and related disorders. Rosie has appointments at least once a week with other Children’s Memorial specialists, including those in the Falk Brain Tumor Center and in the Divisions of Hematology, Oncology and Stem Cell Transplantation; Neurosurgery; Ophthalmology; Endocrinology; Kidney diseases; and Cardiology. Currently, Rosie is undergoing her third round of chemotherapy for her brain tumor, which has resulted in blindness in one eye.
Despite her frequent hospital stays and appointments, Rosie looks forward to visiting what she calls “my hospital.” She always brings gifts, whether it’s a bag of candy for her nurses or toys for other children. JoAnne says Rosie has developed a “special bond” with her neurosurgeon, Arthur J. DiPatri Jr., MD, and with Listernick, who first saw Rosie when she was less than a year old. JoAnne says Rosie also loves her hematology/oncology nurses, Tara Krosschell, SandyVan Leeuwen Sally Hageman.
JoAnne is grateful for the hospital’s commitment to coordination of care, which ensures that Rosie’s caregivers are all aware of her latest treatments and diagnoses. “Because Rosie sees so many specialists, it’s a great advantage that her doctors talk to each other about her various conditions, and how a change in treatment for one of them might affect another,” she says.
Children like Rosie will benefit in many ways when Children’s Memorial becomes Ann & Robert H. Lurie Children’s Hospital of Chicago, which will open in 2012 in downtown Chicago. Its location on the campus of Northwestern University’s Feinberg School of Medicine will offer physicians and scientists studying NF1 greater opportunities for collaboration with colleagues at the nearby Robert H. Lurie Comprehensive Cancer Center and the Northwestern Brain Tumor Institute.
“We’re very excited [about Lurie Children's],” says JoAnne. “We love that there will be all private rooms with more comfortable facilities for families.”
Rosie’s family knows her journey through life will continue to be a challenging one, and that there are many unknowns with NF1.
“One of Rosie’s doctors once said, ‘Rosie is teaching us,’ because he had never seen a case as complex as hers,” says JoAnne. “We’re hopeful that in her lifetime a cure can be found for both NF1 and pediatric brain tumors so that Rosie and children like her will have the opportunity to achieve their dreams.”
Story originally appeared in the January 2010 issue of Heroes Update.