Merrimack Families Taking Strides to Cure CF

Hannah Vigeant and Abby Stover are two 6-year-old girls from Merrimack finishing up kindergarten and getting ready for summer vacation like the rest of their classmates. From the outside, they appear to be two happy girls getting ready for a summer of adventures, but life for the two of them is anything but ordinary.

Hannah and Abby live with cystic fibrosis, a disease they've been battling since they were infants, and living a normal life of a 6-year-old is far from easy.

Hannah's mom, Lee Ann Vigeant, said Thursday that her daughter is one of three young children in town with CF, a genetic disease that infects a relatively small number of people in the country – 30,000 – and an even smaller 200 living with it in New Hampshire.

CF is an inherited chronic disease that can cause problems with the lungs and digestive systems of the people who suffer from it.

According to the Cystic Fibrosis Foundation, “A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

According to Jennifer Stover, Abby's mother, not everyone living with CF has the digestive issues associated with it, but her daughter does. So does Hannah, Vigeant said.

While the girls live with similar daily treatments – taking numerous medications, taking enzyme supplements when they eat, using an inhaler system and vest treatments in the morning and at night that shake their bodies in an attempt to break up the mucus – they have some dissimilarities as well.

Though the girls are just months apart in age, Hannah was diagnosed just two weeks after she was born, and Abby wasn't diagnosed until she was 4 years old.

“I feel very blessed that we found out when Hannah was so young,” Vigeant said.

She believes starting treatments at infancy has allowed Hannah to avoid some of the side effects of the disease and live a more normal life.

Hannah was born May 8, 2006. According to Vigeant, a law was passed on May 1 that year requiring CF testing with the mandatory newborn testing. That's how she was caught so early.

Abby, born just a couple month before Hannah, did not fall into that group and her family was told for four years that Abby had asthma.

As it turns out, both girls entered Reeds Ferry Elementary School this year for kindergarten, but when Vigeant learned there was another student with CF at the school she requested Hannah be transferred out. The reason is that two people with CF really should not be within about six feet of each other, Vigeant explained.

Stover said that each girl, as part of living with the disease, has a near constant strain of bacteria living in their lungs. Abby almost always has some sort of staph infection while Hannah generally carries a MRSA infection.

Cross contamination of these bacteria between two people living with CF can make them very ill.

In fact, each girl had a pretty difficult winter, despite best efforts to keep them healthy, their moms said. Each dealt with back-to-back infections that lead them to back-to-back antiobiotic treatments on top of the constant cocktail of more than 20 pills a day, the enzymes with their meals and the other treatments.

Stover said she and her husband Jason and their other daughters Anna and Rachel feel blessed to have supportive group of friends and family in their lives.

She thinks education is extremely important. Until two years ago, she didn't even know what it was herself, nevermind that her daughter had been living with it undetected for four years prior.

“I think just being informed and knowing the battle these kids go through every day is important,” Stover said. “These kids are such troopers.”

At such a young age, she said it's hard for Hannah and Abby to truly understand what's going on, they just know when they take their medicine and do their treatments, it makes them feel better, Stover said.

Vigeant said she wasn't sure how rare it was to have three kids in the community with CF – a third child, who Vigeant didn't identify without the child's parents' permission is also living with the disease – but given the small number of people that live with it, she didn't think it was common.

“It's just kind of crazy because it is such a small disease,” she said.

It affects only 70,000 people worldwide, and Vigeant said the median survival age is 38 years old.

According to the Cystic Fibrosis Foundation, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. Back in the 1950s, it was common for children with CF to die by the time they were in 5^th grade, according to the site.

This weekend, each family will participate in the "Great Strides: Taking Steps to Cure Cystic Fibrosis" walk being held in Mine Falls Park on Saturday morning. The event is the Cystic Fibrosis Foundation's largest national fundraising event. “Tens of thousands of co-workers, friends and family come together each year as one community for one cause … to help find a cure for CF. In 2011, nearly $38 million was raised to support vital CF programs,” according to the Great Strides website.

Unlike many walks of its kind, there is no fundraising minimum and you can even register to walk on Saturday morning at the event without having raised a dime.

Vigeant and her husband Darrin have a team with a goal of raising $10,000 and they are a little less than halfway there.

Vigeant said her older daughter, Julia, a sixth-grader, has gotten involved in the event herself, creating her own team last year called Little Lifesavers. Vigeant said Julia received permission from her principal at James Mastricola Upper Elementary School to hold a four-classroom coin drive with the winning class earning a pizza party, and she raised more than $750 through that this year.

Vigeant said each walking team has its own goal and make your goal or not, you're still able to walk in the event.

“It's really about raising money and awareness for this disease,” Vigeant said, calling it an “orphan disease.” She explained an orphan disease as one that receives absolutely no federal funding. All of the money raised by the Cystic Fibrosis Foundation is through generous donors.

Vigeant, said she's been very involved with the Cystic Fibrosis Foundation because not only does she feel it's important to educate people about this  disease that attacks the bodies of young kids, but she feels very blessed that her family was able to start Hannah on treatments so young, allowing a little more of a stable life.

“I think it would be really great if we could do something to pull the community together around this,” Vigeant said.

To donate to these three local teams and help raise money to cure cystic fibrosis, visit:

Little Lifesavers

Hannah's Helpers  and

Stover family/Team Abby

The Great Strides walk in Nashua is not the only walk in New Hampshire this weekend. For a complete list vistit the Great Strides website.

The Nashua event begins at the Stellos Stadium entrance to Mine Falls Park at 10 a.m. With registration starting at 9 a.m.