NEW COLUMBIA -- Sixteen-year-old Amanda Lower is a remarkable young woman, filled with strength and spirit as she fights the debilitating effects of cystic fibrosis and awaits a double-lung transplant, her second in eight years.
But she's also a typical giggly teenager.
And on Friday afternoon -- courtesy of a group called the Narberth CF Run, which exists to carry out the wishes of young cystic fibrosis sufferers -- Amanda, her mother, Teresa Sampsell, sister Alysia and cousin Katie Walker were taken by stretch limousine to see the enormously popular boy band, The Jonas Brothers, in concert at the Star Pavilion at Hershey Park Stadium.
"I'm really excited," Amanda said with a shy smile, moments before getting into the limo. She was thrilled to be seeing the group live. This was her fondest wish at the moment. Amanda's favorite Jonas Brother, she said, is guitarist Kevin Jonas.
So determined was Amanda to see the show, she literally got out of bed at Children's Hospital of Philadelphia on Wednesday to prepare for the show.
Going anywhere these days is not easy for Amanda. She is in chronic rejection stage right now and waiting for another set of lungs.
Amanda is "at the top of the list in our region for lung transplants," Sampsell said. "We're just sitting now and waiting for the phone call. It will happen, but it just seems like it can't happen soon enough. It's a horrible feeling to be on the transplant list, because you know that in order to get the lungs, someone else has to die. That's the worst feeling."
Sampsell had to go along with her daughters and niece to the show because Amanda is on oxygen all day and she has to switch out tanks every few hours.
"She also takes about 80 pills a day, so I have to monitor that as well," Sampsell said.
Looking at her daughter admiringly, Sampsell said, "She's had to deal with more things than most people do in their entire lives. Sometimes she asks, Why me? Why do I have cystic fibrosis?' And I can't answer that. She's the only one in the family who has CF."
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, many people with the disease can expect to live into their 30s, 40s and beyond.
"This is what we hope for Amanda," Sampsell said.
"The last time we were in The Daily Item, eight years ago, the paper did a story about Amanda needing a double-lung transplant and, like a miracle, three days later we found a donor," Sampsell said. "Now, here we are eight years later, again looking for a donor. We're hoping lightning strikes twice and the same kind of magic will happen this time as well. We're figuring being in The Daily Item is a lucky sign for Amanda."
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