By Mary Carole McCauley, The Baltimore Sun
8:08 PM EDT, October 19, 2013
Striding in her special black walking shoes decorated with turquoise, pink and lime-green squares, 8-year-old Elizabeth Gardner was, literally, on her way to reaching a milestone.
As she began the Save-A-Limb Ride's 1-mile family walk Saturday morning, Lizzie, as she is called by her family and friends, had to urge her grandfather to keep up.
"C'mon, Pop-Pop!" she called.
Lizzie was born with a rare genetic disorder known as TAR syndrome (TAR stands for "thrombocytopenia with absent radius"). It results in a low blood count, misaligned hands and short arms due to the absence of the side bone, the radius. In addition, Lizzie was also born with no ligaments or tendons and the wrong kind of joint in her knees, according to her parents. Her legs were severely bowed, and she walked on the sides of her feet.
When Lizzie crossed the finish line at precisely 10:57:26 a.m., it was the first mile that she had ever walked on her own. It's been less than a year since she has begun to walk at all — the happy result of the most recent of the 26 surgeries that she has undergone.
"For us," said Lizzie's mother, Lisa Gardner of Reisterstown, "this is huge."
The Gardners were among the roughly 1,000 walkers and cyclists who turned out for the eighth annual Save-A-Limb Ride at Oregon Ridge Park, which benefits children with limb and joint deformities. This year, the event — which consists of five rides of varying lengths and intensities — was set to raise a record sum of more than $230,000.
Dr. Shawn Standard, head of pediatric orthopedics for the Rubin Institute at Sinai Hospital — and Lizzie's surgeon — said that the money is used to pay for costs related to the illnesses that aren't covered by insurance, and to send medical teams overseas to treat children in impoverished countries.
"The children at this ride have been through so much," Standard said, "and yet they still want to give back. They have the most amazing attitude."
Celebrity riders included cycling greats Jens Voigt and Ben King, who both participated in the 62.5-mile ride. Reality show personality Earl Cole (who came in first in CBS' "Survivor: Fiji") flew from Los Angeles to participate in the fundraiser. His friend Jill Behm, a physician who lasted 19 days in "Survivor: Nicaragua," drove six hours from Erie, Pa., to the event and sported a bright-pink T-shirt reading "Team Love for Lizzie."
From age 7 to 14, Cole suffered from a hip ailment called Perthes disease that left him first in a wheelchair, then on crutches and, finally, in a series of casts. He said that his experience coping with his condition gave him the strength to prevail over the other contestants in Fiji.
"The patience and perseverance I learned by going through something like that has helped me to surmount other challenges," Cole said. "Doing 'Survivor' was easy compared to that."
The Gardners would agree.
When Lisa Gardner was pregnant with Lizzie, she and her husband, Chris, learned that their child would probably be born with TAR syndrome. They were told by geneticists that it was unlikely their baby would survive the pregnancy and delivery.
If by some chance Lizzie were born alive, the odds were that she would die within her first year. The genetics team suggested that the Gardners consider abortion.
"We prayed," Lisa Gardner says.
"We decided that if God gave us this gift, it wasn't up to us to decide what to do.
"Her first year was very difficult for us. Because of the prognosis, it was very hard to celebrate. Now we know that Lizzie is here for a very special reason. Since then, I've never worried when she is in surgery. I know that we're doing the right thing and that she'll be fine."
Now, Standard said, Lizzie has the same life expectancy as any other 8-year-old girl.
"She just wants to be a normal kid," Lisa Gardner said.
Lizzie is an active, inquisitive "girly-girl," her dad says. Her favorite color is pink. She enjoys dancing and making up her own words to songs. She's a fan of the boy band One Direction and gets along most of the time with her 7-year-old sister, Sara, a budding fashion designer.
The other day, Sara was climbing a tree. Lizzie was determined not to be left behind. Using her newly strong legs and her outer arm bones, she hauled herself up to the roof of a shed in the family's backyard.
"When I got to the top, I realized I didn't know how to get down," Lizzie said.
She was about 15 feet above the ground.
When Lisa Gardner came outside in response to her daughter's calls for help, she couldn't scold her first-born.
"I couldn't be mad," Lisa Gardner said. "All that Lizzie has ever wanted to be was a normal kid. Now she is, and she's an active kid.
"When I knew that she was safe, I told her that I'd help her get down. But first, I ran inside the house and grabbed my camera."
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