FAYETTEVILLE — MaKenna and Madison Henry look like two normal little girls.
Actually, the Henry sisters look like two adorable little girls. In reality, though, every day is a battle for MaKenna and Madison, ages 5 and 3, as they undergo a series of treatments to fight off the ravages of cystic fibrosis.
The girls have to take digestive enzymes before every meal and snack. They’re constantly ingesting pills, using inhalers and nebulizers, and dealing with nasal drops and saline washes.
Plus there are the twice-daily sessions with therapy vests that both girls must endure. They total an hour in length, although on bad days, they’ll be forced to wear the vests for three, or even four, 30-minute sessions, sitting still while the vest shakes mucus free from their lungs, which allows them to clear it.
“When I keep them, mydaughter has a big book called ‘The Bible,’ which lists everything they take at the time they take it,” says the girls’ grandmother, Beth Leal of Fayetteville. “Sometimes Madison doesn’t want to [wear the vest], but once you get her in it, if you preoccupy her with a movie or game, she’ll sit pretty good.”
Cystic fibrosis is an incurable, life-threatening genetic condition that affects the lungs and digestive systems of around 30,000 Americans, and occurs in one of every 3,500 live births in the United States. More than 10 million Americans are symptomless carriers, and if two carriers have a child, there is a 1-in-4 chance the child will have cystic fibrosis.
The result, for those afflicted with the disease, is that their bodies produce very thick, sticky mucus, which clogs the airways and frequently causes life-threatening lung infections. In addition, the pancreas is obstructed, preventing the body from breaking downand absorbing food and limiting weight gain.
“MaKenna was really struggling with gaining weight, so she has to do an IV drip at night, an eight-hour drip,” Leal says. “It’s another thing to do at night, but she’s gained five pounds in the last month.”
Frequent hospitalizations are common among those who have cystic fibrosis. When Leal organized a fundraiser in the girls’ hometown of Harrison earlier this year, neither of them could attend because they were both in the hospital at the time.
There has been progress against the disease in recent decades. Children born with cystic fibrosis in 1950 were not expected to live past infancy, and the expected age of survival for those born in 1980 was 18 years old.
Today, the expected age of survival is more than double that, but it’s still shy of 40 - and nowhere near the life expectancyfor healthy children.
“It’s so much better ... but you shouldn’t outlive your kids,” Leal says. “I don’t want to outlive either one of them, and I don’t want my daughter to.”
Driven by her determination to find a cure for her granddaughters, Leal has become a passionate advocate in the fight against cystic fibrosis. She has called businesses and restaurants throughout Northwest Arkansas to find fundraising partners, and has planned or held 22 fundraising events since March.
One event she has not planned, but will be taking part in, is the forthcoming Great Strides walk, which will be Saturday at the Bentonville Plaza. Check-in starts at 8 a.m., and the walk is at 9. More than 400 people are expected to takepart in the walk.
Leal will be a part of Team M&M, with the Ms standing for MaKenna and Madison. If all goes well, the girls will be participating in the walk. The goal for Team M&M is to raise $10,000.
“We’ll have 50 people or socome over from Harrison for the walk,” Leal says. “Next year there’s going to be a Fayetteville walk [which would be the first held in the city]. I’m going to be really involved with that, and I want to continue fundraising.”
On Oct. 4-6, the Northwest Arkansas chapter of the Cystic Fibrosis Foundation will host its second annual Spring Valley Redbone Fly Fishing Invitational. It is a two-person team event held at Spring Valley Anglers, a private fishing and hunting club near Decatur.
For more information about the Cystic Fibrosis Foundation’s Great Strides fundraiser, call (479) 442-0233 or visit arkansas.cff.org/greatstrides.
Northwest Profile, Pages 31 on 08/19/2012