By STEVE KOLOWICH, Staff Writer Tuesday, June 05, 2007

enlarge Staff photo by Steve Kolowich

FIGHTING CF: Third-grader Sara Blair is one of about 200 Maine residents living with cystic fibrosis, an incurable genetic disease. Her classmates recently raised more than $600 toward finding a cure.

Today's Top Headlines
from the Kennebec Journal

BUDGET CUTS ORDERED
Many happy returns in Richmond
Tax woes land on Whitefield
Rapist denied new trial
AUGUSTA MINDING A MINE
SPORT OF KINGS Falconry a blend of dedication and commitment
COLLEGE HOCKEY: Maine rallies but falls short against Boston College
COLLEGE ROUNDUP: Colby women win season opener at home tournament

All of today's: News | Sports
from the Kennebec Journal

Today's Top Headlines
from the Morning Sentinel

WEDDING BURGLAR JAILED
Youths talk Turkey Day
Plenty of free Thanksgiving meals available
Turkey prices make for happier holiday
Kennebec County Superior Court
POLICE
COLLEGE HOCKEY: Maine rallies but falls short against Boston College
COLLEGE ROUNDUP: Colby women win season opener at home tournament

All of today's: News | Sports
from the Morning Sentinel

But the vivacious, blue-eyed Sara suffers from cystic fibrosis, a genetic disease that causes mucus to build up in the body, primarily the lungs and digestive system. She has trouble absorbing nutrients from food and sometimes finds breathing difficult.

Sara, diagnosed when she was 7 months old, is one of only 200 Mainers currently suffering from the disease, according to Mary Ellen Corritan of the Cystic Fibrosis Center of Maine. The average life expectancy for a patient is 36.5 years -- 41 fewer years than the average American. There is no known cure.

Many adults probably can't define cystic fibrosis.

Yet the third-graders in Sara's class at Helen Thompson Elementary School in West Gardiner are not only familiar with the illness, they are aware of its patients' life expectancies and the details of their daily regimens of medications and physiotherapy.

These third-graders were not always so well-informed.

For most of this year -- Sara's first at Helen Thompson -- the only people at the school who knew why Sara had to take pills before snack time and lunchtime were her teacher, the school nurse and the principal. But this spring, Sara's mother, Nicole Michaud, made arrangements with the school to offer the third-grade students there what a majority of Americans lack: an education in cystic fibrosis.

"She's going to grow up with these kids," Michaud said, "and I want them to understand and be aware that she has this illness, and it does affect them, and it's in their community."

Michaud, who has become extremely knowledgeable about cystic fibrosis and has spent a great deal of time fundraising for research, came in and spoke to Sara's class about the illness. She then teamed up with the school and CureFinders, the Cystic Fibrosis Foundation's new school fund-raising program for grades K through 12, to organize a fundraising drive at the school.

Over the next two weeks, the third-graders at Helen Thompson Elementary dipped into their piggybanks, candy budgets, baseball card funds and the pockets of generous parents, slowly filling the jars placed in each of the three third-grade classrooms.

The three classes set a goal of raising $500. By the end of two weeks, they had exceeded that figure by more than $100.

"What surprised me most about the CureFinders program and having the kids raise money was not how much money they raised, but the excitement they all had and the support they showed for Sara," Michaud said. "The community has really come together and showed us a lot of support, and I'm humbled by that."

Sara said her classmates' enthusiasm made her feel good.

"I hope they find a cure," she said matter-of-factly, "Because I don't really want CF."

One classmate who emptied her entire piggybank said she did it for a good cause: "to help Sara have a better life."

Sara doesn't have a bad life. By all accounts, she is doing remarkably well.

Though some cystic fibrosis patients are underweight and suffer from frequent coughing fits, Sara is a healthy-looking, energetic child.

Her mother says her coughing spells are few and far between.

Living with cystic fibrosis isn't easy; Sara just makes it seem that way. Her appearance as a normal, healthy third-grader is the result of rigorous, daily efforts, according to her mother.

Although Sara has only been hospitalized twice, she needs to visit the Maine Pediatric Specialty Group in Portland every three months for a checkup. Annually, she must be examined by a team of professionals who do chest X-rays, pulmonary function tests and a series of other exams. That's followed by visits to Sara's physician, her respiratory therapist, her nutritionist, and finally, her social worker, who is working with Michaud to find a therapist who will help Sara cope with her condition as she grows older.

Sara also must take daily measures to combat her illness. Before every meal, she downs a series of pills whose names sound like they were lifted from a science-fiction novel -- creon-10, creon-20, ADEKs and cyproheptadine. The medications are designed to fend off damage to her digestive system, supply her body with essential enzymes and vitamins, and stimulate her appetite.

Twice a day, Michaud also fits her daughter with a vest that plugs into the wall and massages her chest, helping to loosen excess mucus in Sara's respiratory tract. Left untreated, the mucus becomes a breeding ground for infections that can permanently damage her lungs.

Sara is learning how to manage her health.

Her teacher at Helen Thompson, Sheryl Luken, said Sara recently learned how to swallow her pills.

"She handles herself so well," she said. "She's a very confident young lady" who doesn't want to be treated any differently from her classmates.

"I've always told Sara that she needs to take responsibility for her illness," Michaud said. "She's very aware of what she needs to do."

Because some children have a hard time pronouncing the name of the disease, Michaud said, they are taught to say "sixty-five roses" as a way of memorizing a series of sounds similar to the name of the disease.

Similarly, Michaud has had 65 roses -- the trademark symbol of the fight against cystic fibrosis -- tattooed on her left leg.

The ink, which crawls like ivy from the bottom of her shin to the top of her thigh, is the result of five excruciating hours under the needle. She plans to have color added later this year.

The tattoo, which Michaud displayed proudly during a fundraising walk in May, illustrates more than flowers. Michaud said it illustrates her commitment to fighting for a cure to the disease that afflicts her daughter and 30,000 other Americans.

Michaud and her husband had about 20 "Sara's Soldiers" shirts made for family and friends who have joined them in supporting CF research and the search for a cure, which Michaud said she hopes will be discovered in Sara's lifetime.

"I have to," she said, "or I'd go insane."

According to Corritan, the nurse practitioner at the Maine CF center, she has reason to hope.

In the next few years, Corritan said, the number of adults living with CF will outnumber the children, showing that CF patients are surviving longer.

"New direct development is always moving," she said.

And until that development reaches its goal, Michaud says she will keep moving as well -- raising money and awareness, with the 65 roses on her left leg a permanent reminder of what needs to be done.

"I'm not going to stop until there's a cure," she said.

Steve Kolowich -- 623-3811, Ext. 472

skolowich@centralmaine.com