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.

Pat and Keith Connolley enjoy their custom kitchen. Pat is president of the Ches-Del Bays Chapter of the Little People of America. Keith is director of LPA’s District 3. Photography by Jared CastaldiAround 2 p.m. every day, 20-year-old Lizzy MacDonald rolls out of bed, scoots down the stairs, turns on her computer, her music and her coffee maker, then starts to organize her day. She’s a human relations student at Delaware Technical and Community College, a night owl who enjoys keeping up with friends on Facebook, and she’s a NASCAR fan. Her latest projects are trying to figure out how to finance a car for herself and planning a big night out for her 21st birthday.

MacDonald, of Dover, is every bit the average young adult, with one exception—she’s 30-inches tall. MacDonald is one of the possibly 100 people of short stature in Delaware. (There is no official count. All information is collected anecdotally.)

A little person, or person of short stature, is defined by the Little People of America Association as someone whose adult height is 4-feet 10-inches or less. The condition is known properly as dwarfism, or skeletal dysplasia.

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There are more than 350 different kinds of skeletal dysplasias named with several others still unclassified. The most common form is achondroplasia, which is often diagnosed at birth from bowed legs, disproportionately large head, and shortened arms and legs.

Blanket statements, however, should not be made, says Dr. Michael Bober, a pediatrician and clinical geneticist at Alfred I. duPont Hospital for Children in Wilmington. The only thing that all these dysplasias have in common is that they create people of short stature.

Only about one in every 10,000 babies—a fraction of 1 percent of the American population—has dwarfism. Because dysplasia is a genetic disorder, it can happen with any birth.

“More than two-thirds of all achondroplasts are the first in their families,” Bober says.

Wendy Seichepine can relate. She is 5-foot-7. Her husband is 6-foot. Yet their 6-year-old son, David, will probably be closer to 4 feet tall as an adult. Though it was, at first, difficult to understand and accept, they now take a “what will be will be” attitude. Having shows such as “Little People, Big World,” a TLC reality show about a family with two short-statured parents, has helped limit questions from people and given her son someone to relate to.

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Pat Connolley, president of the Ches-Del Bays Chapter of the Little People of America, is often asked about her height of 4 feet. The answer usually satisfies the curious: “I tell children it’s just the way God made me.”

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Being a little person creates bigger ramifications than needing to have pants shortened or having trouble finding fashionable women’s shoes. It means watching your weight more closely because a few extra pounds adds up faster on a smaller frame. It can mean having to take a child’s dosage of medicine while also facing several health problems such as breathing, digestion and brittle bone disorders. It can mean having trouble reaching light switches, door handles, and countertops. But mostly, it means having to be a little more creative and a whole lot more tolerant.

“There’s always that one person who’s going to push it further,” says Roland Stone, of Milford. At 4-feet 2½ inches, Stone has one child who is a little person and two who are average size. He remembers going to school to talk to his son’s peers because his son was being teased for having a short father. It didn’t take much for this former actor, accountant, salesman and computer specialist to turn the kids’ attitudes around with a simple non-confrontational talk. He became Mr. Stone, not just some little guy.

Several members of the LPA speak to school groups to help spread understanding. “If you ain’t got the character to suck it up, you ain’t going to make it. You are out there setting an example for every other little person, especially with children,” says Stone.

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In fact, the one commonality among the people interviewed for this article is they say they have learned to live with being the center of attention. They don’t mind talking about their size, and actually prefer it to long stares and hushed comments.

“I say, let it go,” says Lizzy MacDonald, who has an easier time dealing with people watching her than some of her friends do. “I just laugh about it. It’s not my problem.”

For Lizzy, being smaller than 3 feet tall means she has a different perspective on the world both literally and figuratively. “She does more, as far as physical activity is concerned, by the time she starts her coffee than most people do in a day,” says Beth MacDonald, Lizzy’s mother. “Lizzy is one of the toughest kids I know.”

Lizzy’s day is a balancing act of timing and planning. While making a peanut butter and jelly sandwich might seem an easy task to most people, for her it’s a 30- to 45-minute process. She’s supposed to use her crutches and step stools to get around the house, yet she sometimes climbs into the refrigerator or up some shelves to get what she needs. She says she just can’t wait for things to happen sometimes.

Her mother attends school with her because it is just too difficult for Lizzy to get around alone. There is the loading into and out of the car, the rearranging of desks to find Lizzy a seat and then the cleaning of the table, since she gets infections easily. She does it all with a smile and a laugh.

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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, or call Keith and Pat Connolley at 629-2580.

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