“Maddie may be small for age 9, but she has a giant heart. She says she wants to be a veterinarian when she grows up, so she can cure sick animals. I truly believe that her innate compassion is reinforced by the sensitive care she receives at Children’s.”
— Cheryl Bender
She’s known as Tinkerbell to her friends, classmates and adored older brother Andrew — a nickname that may well stay with Madison Bender her entire life.
Diagnosed as a baby with Neurofibromatosis type 1 (NF), Maddie’s genetic condition is apparent by her short stature.
“She accepts it with equanimity,” Maddie’s mom, Cheryl Bender, says of her daughter, who at age 9 weighs about 45 pounds and is 1-1/2 inches shy of 4 feet. “I think a large part of her good attitude comes from how she’s been treated at Children’s Hospital — with deep sensitivity.”
Maddie was four months old when Cheryl and Mark consulted their daughter’s pediatrician
for what they thought would be a routine treatment for an eye infection. But her eyes didn’t
improve. “It wasn’t until we took Maddie to Children’s Hospital that we got
answers,” says Mrs. Bender.
The Benders learned that Maddie suffered from a genetic disorder in which tumors grow primarily on optic nerves, but also can be found under the skin, on the spinal cord, and in the brain. It also is manifested in slow bone growth. In Maddie’s case, a tumor had wrapped itself around a nerve behind her right eye.
Like most people, the Benders had not heard of Neurofibromatosis, but soon learned that NF 1 is one of the most common genetic disorders, with an estimated 3,000 children born with the condition each year. It can affect anyone, regardless of age, ethnicity or gender. In half the cases, there is no known family history of the disease.
“Our heads were spinning as we tried to grasp what we had just found out,” recalls Mrs. Bender. ”At the same time, we were realizing how many different doctors Maddie needed to see.”
The Benders’ anxiety soon eased as an interdisciplinary team of Children’s Hospital specialists moved in to develop a collaborative medical protocol for their child. In addition to the Division of Pediatric Ophthalmology, this included the Divisions of Pediatric Neurology, Orthopaedics and Endocrinology. While some children with NF 1 suffer from developmental disorders and require rehabilitation services, Maddie has shown no signs of delay. “To this day, the care is extraordinary,” says Mrs. Bender. “Everybody keeps each other informed, and they always include us in the process. The most important thing — Maddie is their focus. They do everything they can for her — including making her feel welcome. Maddie just loves her doctors, and that means a lot to us.”
Maddie’s medical team continues to monitor her condition, including NF 1-identifiable skin lesions (known as café au lait spots) on her belly and the optic tumors. In some instances, they can become malignant.
“We’ve been warned that as Maddie grows older she could become self-conscious about her condition — particularly with her short stature and the café au lait spots,” says Mrs. Bender. “But I sincerely doubt it. Children’s Hospital’s doctors and nurses — everyone at Children’s — have given her not just outstanding care, but the ability to accept herself with confidence.”