Ten days after Morgan Beaulieu was born, doctors diagnosed her with cystic fibrosis.
She’s 8 years old now, and on Sunday she will be taking part in the ninth annual CF Foundation’s Great Strides fundraising walk at Fonda-Fultonville Central School.
“She’s a trooper,” said Morgan’s mother, Stephanie, of Dolgeville. “She’s even out there looking for donations on her own. She asked her teachers and the school nurse she sees every day when she gets her medication.”
The Beaulieus have been taking part in the walk for the last seven years.
This year, roughly 20 of their friends and family will be walking with “Team Morgan” and hope to raise $5,000 in donations.
The event offers live music, prize raffles and lunch, as well as the 3-mile walk, and is expected to bring in between 180 and 200 walkers and raise about $30,000, according to CF Foundation Senior Development Director Jenn Hyde.
Of every dollar donated, 90 cents goes directly to research. Because cystic fibrosis is a genetic disorder, research is complicated, and its symptoms are both life-threatening and time-consuming to treat.
“We all have mucus in our bodies,” Hyde said, “but those with CF have very thick mucus that’s hard to get out of the body. Sometimes the lungs are affected, and they have to wear vibrating vests and take nebulizer treatments to clear their passages. Sometimes digestion is affected, and they have to take enzymes before every meal.”
Morgan’s cystic fibrosis causes mostly digestive issues, according to her mother, which means her normal diet must be supplemented at night through a feeding tube.
Strides have been made toward a cure recently.
A new medication called Kalydeco is the first treatment that addresses the root genetic cause of cystic fibrosis, rather than just the symptoms.
“It has had some amazing results,” Hyde said. “It’s a game changer. We know the direction science needs to go; now we just have to pay for it.”
The problem is, there are nearly 2,000 mutations of the gene that causes cystic fibrosis. Kalydeco works on only 4 percent of those gene types, according to Beaulieu, and Morgan is not in that 4 percent.
Another issue is the relatively low profile cystic fibrosis has maintained over the years. Only 30,000 people in the United States have the disease.
As a result, more common illnesses like cancer and heart disease tend to attract attention. However, to the Beaulieus, and all those walking Sunday, cystic fibrosis is a big deal.
“Currently the median survival age of CF patients is 37.5,” Hyde said.
“We have too many people that need to get married and have careers and productive lives.”
The walk begins at noon Sunday on the Fonda-Fultonville Central School campus. For more information or to get involved, go to www.cff.org/great_strides.