Monday, May 26, 2008

Student graduates from high school despite cystic fibrosis

From the Orland Sentinal in Florida:

ORANGE CITY - -One year after doctors had expected she would die, Cynthia Thomas, then 13 years old, wrote a list of the 21 things she wanted to do before turning 21.

get a tattoo. catch a fish. learn to drive a stick shift.

They were just cursive notes to herself, really -- simplistic proposals in small capital letters with the potential highlights of her life.

Cynthia has known for years that she will probably die sooner than others because she has cystic fibrosis. There is no cure for the disease. Its only prognosis is death.

"She knows what the outcome of this disease is. She knew from a very early age," said her father, Pat Thomas. "It's not pretty. Unless you get a lung transplant, there's only one option: passing away."

Although her prognosis hasn't changed, some of Cynthia's priorities have. She is 18 now and a recent graduate of DeLand High School. She dual-enrolled at Daytona Beach College and earned her 3.86 grade-point average from home.

"The only thing honestly I've ever wanted to do [is] . . . I wanted to walk. I didn't want to just get my diploma. I wanted to walk across the stage," Cynthia said two days before Friday's ceremony. "That was my biggest thing."

Walking across the stage seemed a given when Cynthia wrote her list. But she got so sick that, in eighth grade, she could only learn from home.

"All the kids that are graduating now are the kids I actually started school with, from elementary on," Cynthia said. "Even though I don't know them all, it'd be my class, either way."

Doctors didn't expect Cynthia to live to be a teenager. But somehow, she has pulled through, even as she waits for a double-lung transplant from Shands Hospital in Gainesville.

'I'm fine'

Had this been the 1950s, Cynthia probably would not have lived to go to elementary school. These days, some people with cystic fibrosis live into their 30s.

The genetic disease damages Cynthia's digestive system and clogs her lungs with thick mucus, making it difficult for her to breathe and prompting her to cough incessantly. She has been hospitalized numerous times because of pneumonia and has been diagnosed with diabetes and osteoporosis.

She tries not to let on that something is wrong. People will see her coughing and ask if she is OK as they watch her face turn beet red as she struggles to breathe.

"I'm fine," she'll say.

There are still some people who don't know she has the disease.

"I was just hoping that nobody saw it or heard it, and I'd just pretend that they didn't," Cynthia recalled. "I wanted to be like the kids next to me. I didn't want to be the odd one."

Cynthia's family never allied itself with large support groups for children with cystic fibrosis. But she did make a friend in Corey Wheeler, whom she had known since kindergarten and who also had cystic fibrosis. He died last year from an infection in his digestive system as he was recovering from a lung transplant. Corey was 17.

"It was emotional because we have to think about our future, too. We had almost decided we're not going to do the transplant," Pat Thomas said. "I've always cared about her quality of life. I don't have a say-so on when my daughter leaves this earth. But I have control on her quality of life."

Cynthia's parents have always assured her that she can stop fighting if the pain gets to be too much. They have decided to still hope for a transplant, but the concept remains a lot to take in. Read the complete article.

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