GoHeels Exclusive: Making An Impact

By Pat James, GoHeels.com

Around this time a year ago, Joe Sagula met Kelsie Houston for the first time.

Before attending their first North Carolina volleyball match, neither Kelsie nor her younger sister, Mackenzie, knew anything about the sport. They became enthralled with it, though, after Sagula and his players opened their arms to the Houstons, taking the family on a VIP tour of the locker room and sending the girls home with team-signed volleyballs.

Sagula knew Kelsie would be at Carmichael Arena that day, thanks to someone who put them in touch. But not until recently did he know anything about her story.

Both Kelsie and Mackenzie have cystic fibrosis (CF), a chronic, progressive disease that causes persistent lung infections and limits the ability to breathe over time. More than 30,000 people in the United States live with CF. And although significant progress has been made in treating the disease, there's still no cure – and too many lives are cut far too short.

That, however, hasn't kept Kimberly Houston and her husband, Nathan, from seeking out opportunities that'll bring joy to their children's lives. Nor should it.

For 8-year-old Kelsie, there's been soccer and softball and swimming in the past. Currently, she enjoys surfing and dance. And perhaps now, after signing with the UNC volleyball team through Team IMPACT on Saturday, she'll be compelled to give volleyball a try.

She'll certainly have plenty of people to learn from.

"This is like a two-year volleyball camp," said Kimberly shortly after Kelsie's signing day ceremony and a celebratory meal from Chick-fil-A.

Initially, Kimberly was unsure about becoming a part of Team IMPACT, a national nonprofit that connects children facing serious and chronic illnesses with local college teams for typically 2-3 years. She worried that joining the program might make Kelsie feel different, or as if something is wrong with her.

But those concerns dissipated after Kimberly spoke with a Team IMPACT representative and learned about the program's mission.

"This is a program that helps build confidence in young children, lets them be a part of a team and experience that togetherness and that exposure to an athletic program," Kimberly said. "In the beginning, I thought, 'What could she really gain from this? She gets to watch the team play.'

"But to see the parallels between being a college athlete and living with a chronic illness, it takes a lot of perseverance, it takes a lot of commitment to health and taking care of your body, self awareness. You need others to support you and work together, and it's another way to bring more joy and excitement into her world and for more people to love on her and make her feel special and cared for."

The easiest part for Kimberly was choosing a team to match Kelsie with. The Houstons live in Pittsboro. And given Kelsie's experience at her first volleyball match, Sagula's program seemed like a perfect fit. The pairing also couldn't be better for the Tar Heels.

"Kelsie can help our program get to the next level with the personality she brings every day," Sagula said. "She has a never-give-up attitude and has been through a lot and we know that's the type of determination we want in all of our players. She has an unbreakable spirit, which is outstanding. And that makes her an ideal teammate."

As such, Kelsie will attend practices, games, team dinners and more. She's already been given a tour of UNC's athletic facilities. She also attended the team's photo day.

Overall, the way the team's already embraced Kelsie has left Kimberly wondering why she ever felt hesitant about joining Team IMPACT.

"There's no reason not to do this," Kimberly said. "It can only be a positive experience in her life right now, and that really helps overshadow a lot of the bad things and hard things that she has to go through."

'Living life to the fullest'

In March 2011, about two weeks after Kelsie was born, Kimberly and Nathan learned their first child had CF, a genetic disease that neither parent knew they were a carrier of, but that Kimberly had some familiarity with.

Then a nurse at UNC Children's Hospital, Kimberly had cared for children with CF. That, however, couldn't prepare her for the daily challenges of raising a child with the disease.

It's one thing, Kimberly said, "to know about the disease and know the textbook answers and the medications." But how do you administer all that medicine to your own 2-week-old baby? How do you keep them healthy? And how do you know if it's even safe to take them outside?

"(There are) all of these questions you would never think about if you just cared for someone in the hospital," Kimberly said. "To have that full responsibility of their whole life now, and protecting their future, it's a huge weight."

Despite it, Kimberly and Nathan have always strived to give Kelsie the best life possible.

"We really tried to focus on the here and now," Kimberly said, "and living life to the fullest, promising we would give her the opportunity to be a normal kid and to really thrive, regardless of what the future of this progressive illness may suggest."

They vowed to do the same when Mackenzie was born with CF four years later.

From the outside, Kelsie and Mackenzie look like any other healthy children. But they take hundreds of pills a week between the two of them, make frequent doctor's visits and have daily breathing treatments delivered through a vest to help clear the mucus from their lungs. Their treatment needs will only increase as the disease progresses.

As demanding as it is to raise two children with CF, it's become almost routine for Kimberly and Nathan. That wouldn't be the case without the integral support of friends and family.

"It helps to take off some of the pressure and helps to overshadow some of the sadness that you might feel," Kimberly said. "It keeps you smiling and keeps you moving forward."

Because even though Kelsie and Mackenzie are doing well right now, the Houstons aren't just going to sit back when there's work to be done.

'The need to give'

When the Cystic Fibrosis Foundation (CFF) was founded in 1955, there were no treatments for CF and most patients didn't survive to elementary school, according to the foundation's website.

But in the years since then, the CFF has added decades to the lives of people with the disease by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care. More than 25 therapies are currently in development. Still, the foundation needs more money to help people with CF live longer, healthier lives – and to also accelerate its search for a cure.

The Houstons recognize that. And they're determined to do their part.

"We feel like we can't just sit back and wait for changes to be made, for new CF therapies to come along," Kimberly said. "If we're not the ones pushing and helping raise money for this very expensive research, then that's just going to delay it that much longer.

"Everything we're a part of, we believe in raising awareness for CF so that people understand the need to give."

Each year, the CFF holds nearly 400 Great Strides walks across the country in an effort to raise funds and awareness for CF. The Houstons have participated in the Wake County Great Strides event the last three years. And in each of their first two appearances, Kimberly said their team, "Take it Away," raised between $12,000 and $14,000.

As impressive as that is, the Houstons far exceeded that total this year.

Sometime last fall, Kimberly's cousin, Mark Hayes, called her and suggested the family organize an event to raise even more money for Great Strides. Hayes proposed a bike ride. To get more families involved, Kimberly recommended they combine it with a 5K. The idea continued to evolve from there, before culminating with the first annual Take CF Away Cycle & 5K in May.

Kimberly, Nathan and Hayes organized the event, held in downtown Pittsboro, in just four months. Ultimately, it drew about 285 participants and raised $37,000 for the CFF.

It took a lot of time and effort, Kimberly said, to plan the fundraiser while taking care of two children with CF and "just all the other things that life requires." But all the work they put into it was more than worth it. It always will be.

"We believe the more work we can put into advocacy and raising awareness for CF," Kimberly said, "and raising support and monetary resources for the Cystic Fibrosis Foundation, the more hope there is we'll see an end to this disease in our girls' lifetimes. That's something we will not stop fighting for, until a cure is found."

'A long-term commitment'

In the meantime, Kelsie and her family intend to be at Carmichael Arena whenever they can.

Everyday life might occasionally intervene. Of course, there's school, and her dance lessons keep her busy two or three days each week. But even when she's not around the newest members of her team, they'll more than likely be on her mind.

"She tells everyone how fun they are and all that they do and talk about," Kimberly said. "The girls have just blown me away with how they have taken the time to get to know her. They're just really interested in her life."

Initially, Sagula was also unsure about what to expect when some of the veterans on his team approached him about becoming a part of Team IMPACT. He'd never participated in the program before. Nor did he know much about it.

But Saturday, he saw how his players welcomed Kelsie. That made as much of an impression on him as anyone else in attendance.

"This is not like, 'Oh, we're going to have one good day,'" he said. "This is two years or more, we hope. It's a long-term commitment."

And one that hopefully leads to life-changing outcomes.

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