On a mission for Marina Seabrook girl doesn't let cystic fibrosis slow her down

Twenty-four hours after giving birth to her daughter, Marina, 11 years ago, Vicki Felch sat terrified in a room at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., listening to a specialist.

"He told us she had cystic fibrosis," Felch said. "I'd never heard of it before. I asked him if I was going to need a wheelchair for her."

At the time, a diagnosis of cystic fibrosis — an inherited, genetic disease that attacks the lungs and digestive tracts of its victims — meant a short life expectancy of just 26 years.

The thought overwhelmed Felch and Marina's dad, Charles "Puggy" Felch, for a time. There would be expensive medication, daily physical therapy and endless doctors' appointments just to ensure Marina would survive the respiratory and digestive problems the disease would cause in her tiny body.

But as the months passed, the family rallied. To survive wasn't enough, they said; a cure had to be found. Giving up wasn't an option.

"I said to myself, 'If this is the way it is, I'll just work to help find a cure,'" Vicky Felch said. "Just since Marina was born, things have improved a lot. Life expectancy went from 26 to 30. Then from 30 to 37. Today, I've met many CF survivors in their 40s. CF patients are having families. I really believe we'll find a cure for CF in Marina's lifetime."

To look at Marina, no one would realize she lives with a disease that decades ago killed children before they ever got to elementary school. Well-adjusted, beautiful and active, Marina plays sports, takes part in many activities — she is a past Little Miss Seabrook — and is a good student.

Marina knows about her illness, her mother said, and takes it in stride. The 11-year-old isn't hesitant about trying things, and playing hard and well at the things she enjoys. And the Felches try not to be over-protective, allowing their daughter to be as normal as cystic fibrosis allows.

"We know we're blessed," Vicki Felch said. "Marina is actually very, very healthy for a survivor of cystic fibrosis. The doctors use her as an example of a healthy CF person. She plays sports; she swims with the dolphins."

Felch credits her daughter's health and survival with improvements in cystic fibrosis treatment over the years, in part resulting from research fostered by money raised through the Cystic Fibrosis Foundation. She said the discoveries from the research make an enormous difference in the daily lives of children like Marina. The nearly $2,000 in medication Marina takes each month and the daily physical therapy that helps keep her lungs clear all come from breakthroughs in treatment, she said.

One day while in the doctor's office for a visit, Felch saw a pamphlet for the Cystic Fibrosis Foundation's Great Strides fundraising walk. When she couldn't find a CF walk near Seabrook, Felch decided she'd start her own.

In the decade since it began, Seabrook's Great Strides Walk has raised more than $100,000 to find a cure for the disease. Felch hopes to once again raise at least $10,000 through this year's walk, set for Sunday, May 18.

But the walk wasn't enough, Felch said. For the past six years, a CF Benefit Jam in Seabrook has raised another $5,000 to $6,000 a year, with all proceeds going to the Cystic Fibrosis Foundation in the name of "Marina's Mission." This year's benefit is tomorrow.

Felch knows firsthand how terrified parents are when they hear their child has cystic fibrosis. She encourages them to learn as much about the illness as possible, then become part of the cystic fibrosis team.

A cure is possible, Felch believes, and it isn't as far off as many think. Marina's big brother plans to be part of the winning team.

"You know, they bicker like all brothers and sisters, but he (young Puggy) is very protective of his sister," Felch said. "He told me the other day he's going to be a doctor so he can find a cure for CF."

r A CF Benefit Jam takes place tomorrow at 6 p.m. at Seabrook's American Legion Hall on Walton Road. There will be food, prizes, music, dancing and plenty of fun. Area businesses rally around the annual event, contributing money, gifts and certificates, food and encouragement. Vicki Felch said the community responds every time. Admission is $7. Proceeds benefit the Cystic Fibrosis Foundation in the name of "Marina's Mission."

r Seabrook's Great Strides takes place Sunday, May 18. It starts at 10 a.m. at Seabrook's Fire Station. Felch said the Fire Department has opened its doors and hearts to the "Marina's Mission" effort, in part because her daughter and family have lots of friends as well as relatives there.

To take part in Seabrook's CF events, contact Vicki Felch at VICTORIA-LEE-152@hotmail.com, or at 603-997-1751.

Photos

Eleven-year-old Marina Felch, pictured with her mother, Victoria, at their Seabrook home, was diagnosed with cystic fibrosis at birth. But the girl doesn't let the disease stop her from playing sports and participating in all the activities she enjoys, including swimming with dolphins. Staff photo

Marina Felch, 11, pitches the ball to her friend, Jazmine Perkins, 10, on Seabrook Beach last month. Staff photo