8-year-old fights battle

against cystic fibrosis

FRYEBURG – Jumping with joined hands on a trampoline with her brother Mike, 9, Nicole Reynolds was one happy kid Tuesday. Suddenly they jumped down and drove around and around, in a colorful battery-controlled toy car.

Just as active as any other eight-year-old. Just as care free.

That same enthusiasm prevailed once she settled down with her mother at the kitchen table to talk about how it feels to have a fatal genetic disease, cystic fibrosis, where most people don’t live past age 30.

She’s had it since she was born, and spent her first six months of life in a hospital. There have been numerous hospitalizations since, usually for one or two weeks at a time.

“That’s just the way God made me,” she said.

She’s been raising money for a cure for CF since she was a toddler, participating with her family in the annual Great Strides to Cure Cystic Fibrosis Walkathon, sponsored annually by the Cystic Fibrosis Foundation. She also skied at a CF fund-raiser at Attitash Mountain in March, an event that raised more than $120,000 for the foundation, which funnels 90 percent of its funds into research for a cure.

Her mom, Leslie Mallar-Reynolds, father Paul, brother Mike and sister Jessica, 12, will all be walking with her at this year’s walkathon, which gets underway at 10 a.m., Saturday in Payson Park in Portland. Nicole hopes to raise $2,500 – the most she’s raised so far.

She reached behind her for a stack of pictures she drew to sell on the roadside of her family’s rambling Route 5 farmhouse.

Pointing to one drawing of a big window, Nicole said, “See? All the bad weather’s outside, and all the good weather’s inside.”

She sells them for $1 apiece – and people do buy them.

Nicole must endure daily treatments with a chest percussion machine and a nebulizer to loosen the thick and sticky mucus that blocks air passages to the lungs and impairs the pancreas, where digestive enzymes are made.

On a good day, the treatments last a half hour, twice a day. On a bad day – and Nicole has had plenty of them – the treatments take up to two hours, twice a day.

“I play with her when she does the chest PT,” said her sister Jessica. “We do games.”

Nicole also has an older sister Keri, 19, attending Thomas College in Waterville.

Even though she’s active and athletic, and involved in Brownies, “There isn’t a single second of any day when you don’t know she has CF,” her mother says. Nicole must rest often, and take extra care not to catch a cold or be exposed to smoke or other allergens.

Mallar-Reynolds, a single mom and substitute teacher for the SAD 72 School District, is as philosophical about the disease as her daughter.

“It just is what it is,” said Mallar-Reynolds.

Nicole munched on popcorn and graham crackers at the kitchen table, her legs tucked up on the seat. Daily, she must eat between 5,000 and 6,000 calories of high-fat foods, and take at least 20-30 enzyme pills and a host of multi-vitamins. The regimen is needed to compensate for all the food that can’t be digested because of the mucus blocking the pancreas. Despite how much she eats, she weighs 54 pounds, and doesn’t gain weight.

More recently, the disease has started to show up in her gallbladder and liver, as well as her sinuses.

“The best thing I like about it is I get to eat a lot of food,” Nicole says. Every school day, her mother packs a huge tub of puddings, chips, pop tarts, juices and other fatty foods that Nicole keeps in her second grade classroom at New Suncook School.

The worst thing about having CF, Nicole says, is the medicines she must take. “They don’t taste good,” she said.

“She’s a tough kid,” her mother says. In the morning, she tells her mother, “Let’s do the treatments and get it over with, so I can get on the bus.”

Anyone wishing to sponsor Nicole on her walk may send a check, payable to the Cystic Fibrosis Foundation, to Nicole Reynolds, RR 1, Box 53, Fryeburg, ME 04037.

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