Living with Dwarfism
Life for people with skeletal dysplasia is getting better, thanks in part to the renowned research and care of a local children’s hospital.
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Lizzy, who has considered starting a charity to help other people like her, knows there is plenty of help she can offer. Her type of dwarfism, Spondylo-epiphyseal dysplasia is fairly rare, and led to multiple surgeries and daily discomforts. Lizzy is the model doctors and nurses use to teach new staff members and to monitor new patients.
Her body is a roadmap of scars from surgeries—surgeries to help her breathe, surgeries to straighten her legs, surgeries to help keep her from being paralyzed, the list goes on. She wasn’t expected to live, but she fought through. Doctors thought she’d never walk, but she used to pull herself up to stand in her hospital bed as a child.
In the 10 months she was in the hospital immediately after she was born, Lizzy would code, meaning she would have to have emergency resuscitation to save her life, several times a day. As soon as she was stabilized, she’d start to giggle, her mother says. It’s a lot, but for the MacDonalds, it’s just life.
Life for people with skeletal dysplasia, though, is getting better, a lot in fact due to research and care given at Delaware’s own Alfred I. duPont Hospital for Children. The Skeletal Dysplasia Program at duPont Hospital is one of the world’s foremost centers in the treatment of skeletal dysplasia, offering expert, state-of-the-art medical and surgical care for children with dwarfism.
The condition is so rare that most pediatricians don’t know how to diagnose or treat such a child. Growth charts for average-sized children don’t work for little people. More than 250 short-statured children from around the world come to duPont each year to receive treatment at the center where Bober and staff work. It’s the busiest pediatric practice in the country, he says.
The Internet and television have revolutionized the lives of people with skeletal dysplasia. Once relegated to freak shows and comic relief in movies, today little people are found in all areas of life—doctors, teachers, lawyers, pilots.
Keith Connolley is director of the LPA’s District 3, that has 200 members from Delaware, Maryland, District of Columbia, Virginia, North Carolina, and South Carolina. The first time he saw another little person, he was 18 and walking into his first LPA convention in 1968. He always remembers the feeling of meeting people who were just like him and encourages others to get involved with the organization.
“When you realize you’re not the only one and talk eye to eye with someone, it does you a world of good,” says Connolley.
For more information about the LPA visit lpaonline.org, or call Keith and Pat Connolley at 629-2580.