Girl waits for lung transplant Family's finances strained

[Guest guest]

Florida Times-Union (ville, FL)

                   March 22, 2003 Saturday, Community Edition

HEADLINE: Girl waits for lung transplant Family's finances strained

BYLINE: Maraghy, County Line staff writer

    Boyett of Fleming Island plans to take up gymnastics and

cheerleading when she gets her new lungs.

    'I'm excited,' said the sixth-grader at Thunderbolt Elementary

School. 'I

plan to do a lot.'

    The motivated child with a passion for life and broadcast journalism

needs a

double lung transplant because her lungs have deteriorated from cystic

fibrosis,

a genetic disease she's had since birth.

    She gained fame when former New York Mayor Rudolph Giuliani visited

her

hospital room during a visit to ville. and her family

visited New

York as a gift from Dreams Come True, a foundation that provides dream

trips for

seriously ill children.

    's lungs have deteriorated at an accelerated rate, said

Tobin, spokeswoman for the Cystic Fibrosis Foundation in Bethesda, Md.

    'It's unusual. She's very young,' Tobin said.

    's 9-year-old brother, , has cystic fibrosis, too. But

his is

not as advanced.

    Meanwhile, the illness is putting a financial strain on the Boyett

family.

Probably an emotional strain, too, but it doesn't show, said guidance

counselor

Jane Veschio who has been amazed by both and her family's courage

and

strength.

    Veschio said when is well she arrives early at school day

after day

to do the morning school news show.

    'She's different than any other kid I've ever known. Her drive is

just

incredible. We'll be seeing her on national news someday,' Veschio said.

'When

she gets her transplant, stand out of the way.'

    Cystic fibrosis is a genetic disease that causes a buildup of mucus

in the

organs, mainly the lungs and the pancreas. Even with the transplant, she

may

live only another 10 years, said her father, Boyett.

    'She may not marry. She may not have children,' he said.

    But there's no time to dwell on that, Boyett said.

    'Life is really busy,' he said. 'We are constantly gone.'

    often spends two weeks of every month at Shands hospital in

Gainesville. She was released on Monday after a week-long stay.

    said she can last only about two weeks without intravenous

antibiotics, then she starts to experience flulike symptoms and has

trouble

breathing.

    When is in the hospital, her mother, Susi, drives from her

job at a

bank in downtown ville to Gainesville to spend the night in a

chair at

's bedside. Then she drives from the hospital to work the next

day.

Meanwhile, 's father visits her during the day, after getting

's

two younger brothers off to school, also at Thunderbolt.

    'We do a lot of driving,' he said.

    But when is not hospitalized she goes to school and does more

in a

day than most students do in a week, Veschio said.

    Through amniocentesis, and Susi Boyett knew had the

disease

before he was born. They said they are Christians and would not have

aborted

regardless. They had a cystic fibrosis specialist on hand at his birth,

which

gave him a better start. With , it was unexpected. The Boyetts

didn't

know they each carried half the gene for the disease.

    Boyett's home-based computer consulting business has dried up

as a

result of the shaky economy and his days are spent at hospitals with

or

his son, . recently went in after being healthy for more

than

four years.

    Boyett said he's reluctant to ask anyone for help but the

family is

struggling.

    A double lung transplant will cost about $ 350,000, said Rick

Lofgren,

president of the Children's Organ Transplant Association in Bloomington,

Ind.,

which is currently setting up a fund for . The association has

raised $

30 million for about 700 children in need of transplants.

    Lofgren said follow-medications needed after the surgery can cost

even more

than the surgery.

    The Boyetts are keeping a positive outlook.

    'With advances in medicine, they may find a way to give her a happy

life,'

said Boyett. 'We knew a lady with cystic fibrosis who lived to be

45

years old and had three children. The hope is there.' Staff writer

Maraghy

can be reached at , extension 19, or

mmaraghy@....

FUND FOR MELISSA

    To help the Boyett family with transplant expenses, send a check in

care of

B. to the Children's Organ Transplant Association, 2501 Cota

Drive,

Bloomington, IN 47403. Online donations can be made at www.cota.org.

Becki

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