Illness spurs life of achieving, giving

June 19, 2005|By Cassandra A. Fortin | Cassandra A. Fortin,SPECIAL TO THE SUN

Eighteen-year-old Amanda Bory steers her wheelchair through the halls of Perry Hall High School before graduation with the precision of a race car driver. She does it effortlessly. She never asks for help, and a wide smile seems to indicate it's all under control.

When she tells her story, she paints a panorama of illness, surgeries, pain and optimism. Despite suffering from a debilitating disease, Amanda created a program to benefit sick children, earned straight A's in school, and adopted an orphanage in South Africa.

Amanda's story begins with a childhood incident that changed her life forever.

"When she was about 18 months old, Amanda was playing in the back yard with a little neighbor boy," said her mother, Mary Jayne Bory. "He pushed her as kids do, and she fell down. He didn't push her hard, just playfully. She just lay on the ground and screamed. We couldn't figure out why she seemed to be in so much pain."

Mary Jayne Bory and her husband, Bill, took Amanda to the hospital. The diagnosis was a spiral fracture to the femur (the bone that runs from the hip to the knee). Even more shocking was the cause - McCune Albright Syndrome.

The high school senior suffers from the rare disease, which, according to Amanda, has only about 50 diagnosed cases in the United States.

Amanda, who's well-versed in her disease, said it weakens her bones. She said that small holes form in the bones, which fill with a jelly-like substance, a condition known as fibrous dysplasia. Other symptoms include early puberty and a rapid rate of growth at an early age that abruptly stops.

"No one is sure of the cause," Amanda said. "It's a mutation of a gene. Something just goes wrong. There's very little precedent for the disease. The one thing we know for sure is that it's incurable.

"My illness has helped me turn obstacles into opportunities. It makes me run 100 miles an hour because I don't know when things will stop for me."

Some days she feels like things will stop sooner than others. Every day Amanda faces excruciating pain. She has to be careful wherever she goes. A slight bump or hit can break a bone; she has found that out the hard way. When she makes plans to go with friends to a movie or other activity, she has to plan ahead.

"I have to think about the doors, elevators and wheelchair accessibility," Amanda said. "If there aren't elevators, I have to come up with alternatives. I can't stand for a long time. I have to walk with a cane or use my wheelchair."

A full schedule

Amanda does the things that matter most to her. At school, she's on the student council; is editor in chief of The Vignette; and a member of the class senate, the National Honor Society, the Music Honor Society and Quill & Scroll.

In her spare time, she does what she can to help others - especially sick and needy children.

"I feel like through all my experiences I have a responsibility to give back to my community," Amanda said. "When I feel most empty, I give and that fills me up again."

Her life experiences have sparked ideas for ways she can give.

Amanda has had seven surgeries, five of which required a full body cast. Her parents bought a hospital bed to use downstairs in their home. These aren't the things Amanda remembers most. What she recalls most vividly is how scared she was when they took her to the cold, dark, surgical rooms - alone.

"I remember being scared and wanting my parents," Amanda said. "So my Mom and Dad would sleep with my blanket before a surgery and give it to me to take with me when they took me back. I could smell their perfume and cologne, and it made me feel better. It was like a fuzzy hug from my parents."

Amanda used her experience to make life easier for other kids with illnesses with a program she affectionately dubbed "Fuzzy Hugs."

"I called Oak Crest Village [retirement community] and asked if they would like to knit or crochet some blankets for my program," Amanda said. "They generously offered to help out. When I went to pick them up, they had made like a hundred blankets. There were all sorts of them."

Amanda took the blankets to the Kennedy Krieger Institute's PACT day care program for sick children and Harford County Social Services.

Audrey Leviton, executive director of PACT, said the blankets were a hit.

"We talked to the parents before Amanda came to the center," Leviton said. "We wanted everyone to know what we were doing. But everyone loved the idea, and the kids love their blankets. I have moms telling me their kids won't let anyone take their blankets. And I think it's inspirational to the parents of the kids because they worry about their sick children, and when they see what Amanda's doing ... it gives them hope."

`Just wonderful'

Amanda recalled one child who felt right at home with the situation.

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