She's pursuing her dreams of dancing and achieving her dream of walking.
Standing at just 26 inches tall, five-year-old Samantha Binning may be small for her age, but she dreams big.
Born with a brittle bone disease called Osteogenesis Imperfecta (OI), Samantha's two foot-plus frame, is a small miracle. Seven months into her mother Heather Binning's pregnancy, Heather and her husband, Pat, were told their unborn daughter had so many broken bones she probably wouldn't survive the delivery.
"When Samantha was delivered, they immediately whisked her away to the NICU," says Heather. "She survived the first day and then the second." Born in Kansas City where the family lives, Samantha was transferred to another hospital. Amazed by their baby's survival, but frustrated by the lack of progress in her treatments, the family searched for other options. "We thought maybe we would need to head to Salt Lake City or Montreal, but then we heard about Omaha," says Heather.
The Children's Hospital Metabolic Bone Diseases Clinic is known nationally for its specialized care and expertise in treating patients with OI. The clinic is led by medical director Richard Lutz, MD, associate professor of pediatrics at the University of Nebraska Medical Center and Paul Esposito, MD, pediatric orthopedic surgeon at Children's and professor of orthopedic surgery and pediatrics at UNMC.
Dr. Esposito and a skilled team of specialists aligned her bowed and fragile limbs with surgically adjustable rods that grow with her, slowing the cycle of painful fractures. Dr. Esposito is an expert in "growing rod" surgery, which involves the placement of metallic devices called rods, or nails, into the cavity of a long bone.
In 2005, at the tender age of two, Samantha underwent surgery to insert rods in the femurs of both legs. Then, in late 2006, Dr. Esposito repeated the rodding procedure in her arms and tibias. The expanding rods can keep up with a few years of growth, but then must be replaced with longer rods as Samantha grows. Samantha travels to Omaha once a year for check-ups. The Children's team also oversees a medical treatment plan which includes maintenance doses of Pamidronate, a medication to slow down the release of calcium - a process that can further weaken Samantha's bones.
Despite her wishes to be ‘big,' Samantha will most likely grow to be no more than about three feet tall. "We won't ever be able to give her size," explains Heather, ‘but Dr. Esposito has given us as much as he possibly can. He's given Samantha a foundation and she can do what she needs from there."
At age four, Samantha began to take a few steps. It was a big milestone for someone who someday dreams to be a dancer. What Sami lacks in her size, she makes up in smarts and spunk, says Heather. "Sami is outgoing and sometimes a ‘know it all' with her determination," she says. "She has a great sense of humor and she's a happy child."
"Finding Omaha has been one of the best things in Samantha's life. Dr. Esposito has given her so much strength and so much freedom to be like the other little girls she sees."
Who knows, maybe someday Samantha's dreams will come true.