A TRUE LABOUR OF LOVE
Hoops for Hope basketball tournament is more than just a game for the Nechvatals
Basketball is the sport, but the name of the game is competing against — and hopefully someday beating — cystic fibrosis. The Hoops for Hope tournament has become an annual event in Saskatoon, spearheaded by the Nechvatal family, whose two boys, Dominic and Ben, live with the fatal disease. The three-on-three tourney was created and continues to be co-ordinated entirely by volunteers Shaun and Katarina Nechvatal and Shaun’s sister, Sharlene Mcnairn. Hoops for Hope, which began in 2010, has raised more than $260,000 for Cystic Fibrosis research and care through its first seven years prior to this year’s event, to be held on Sept. 15. “People are understanding that it’s a fundraiser and it’s a great event to celebrate and be active and play some basketball,” says Shaun Nechvatal, a high school teacher at E.D. Feehan.
“Now they’re realizing the real focus behind the event is to raise funds for cystic fibrosis research and care, and to continue to raise awareness for the disease and the struggles behind it.” The family has seen the tournament grow and the fundraising increase each and every year since its inception. “Year one, we raised $10,000,” recalls Katarina Nechvatal. “Last year, for our seventh tournament, we raised just over $67,000.” It’s a huge undertaking for the family. How do they manage? Katarina laughs. “Nervous laughter,” she points out, adding that you have to be a little “crazy ” to take on something like this. But, she adds, they would not have been able to do it without a “catalyst” — that being the connections that both Shaun and Sharlene, both former University of Saskatchewan Huskies, have in the basketball community. “Without those already having been established, I don’t think this would have gone (ahead) … At times, it has been all-consuming.” Shaun says they are now receiving some additional help a staff member from Cystic Fibrosis Canada. Other than that, it’s “the three of us” and it’s truly “a family endeavour,” he says. “Really, it’s an area we’re passionate about, not only basketballwise but the fundraising and the cause itself is obviously near and dear to our hearts.” Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. The progressive, multi-organ disease primarily affects the lungs and digestive system, making it difficult to breathe and absorb nutrients essential for growth and general well-being. Nearly all CF deaths are caused by respiratory failure. A parent’s worst nightmare is hearing the news that their child is sick and is going to die. For Katarina and Shaun, that’s been the case, now, for three of their five children. It started back on Dec. 1, 2008, when they received a phone call informing them that Dominic, who was one month old at the time, had cystic fibrosis. That led to the inaugural Hoops for Hope three-on-three tournament in 2010. The family poured their hearts into the fundraiser in support of CF research and care, attracting more than 30 teams that first year. “It’s obviously something we’re passionate about,” points out Shaun, adding that they have “tremendous sponsors” who come to the table in supporting the event. “Pow City Kinsmen are title sponsors and they come in and this is their third year of donating $10,000 to the event. Saskatoon and district Kinettes host a barbecue. I can go and on and list sponsors.” Katarina and Shaun Nechvatal have four children: Ben, two; Dominic, nine; Anika, 12; and Eva, 14. A fifth child, Jonathan, died in
The tournament was not played that year, but returned in 2015. It’s been going strong ever since. Experiencing the devastation following the death of their beloved child, grief was “nearly paralyzing,” both parents admit. Yet, their fears were put into perspective. They realized that they needed to continue to work toward a cure for CF. Katarina says people realize the event is bigger than basketball and CF. “They can see the accessibility of our event,” she says. “We have a huge range of skill level in our players. Last year was our first year of welcoming a wheelchair division, so that’s great. Once again, we’re showing that it’s possible for everybody to play a part, no matter their ability. And I think they also see how many youth are involved and it’s a great way for youth to feel like they ’re really making a difference. “For me, that’s one of the most special things of our event.” For their efforts, the Nechvatal family has been honoured twice with major awards from Cystic Fibrosis Canada. The first was a grassroots award at the prairie regional level. The second was a national leadership award, the Celine (Dion) Award, which acknowledges a volunteer individual, couple or family who has made indispensable and sustained contributions to chapters at the grassroots (nonexecutive) level. “It’s a big honour to receive something like that — we were really shocked,” admits Katarina. “After receiving the award, I thought that our family were some of the crazy ones keeping this (event) going, but there’s no way the event would happen without the community members behind us and supporting us. And the players who come out every year.” One such player, she points out, is Gavin King. “Our first year, in 2010, we had a team called Dudes and Dads. It was a couple of dads who played in the adult recreational league and their sons who were (teenagers).” King was of those kids who played back then. He has come out every single year. “He has told us that it’s his favourite time of the year. This year, he put in an adult coed team called Dudes and Dates. I love that progression. You see people coming back just because they love it.” Days are extremely hectic in the Nechvatal’s East Heights household, where two of four children face a daily battle against CF. There are no days off. “Not even Christmas,” Shaun points out. “You’ve got to find out what works.” You learn to deal with it by necessity. “And it’s a necessity for them to be healthy, to do all the activities that they can,” Shaun says. “It’s making sure they are both as healthy as can be for as long as they can be.” Adds Katarina: “We’ve learned to ask for help. I’ve learned to ask for help graciously.”
Dominic was diagnosed at six months old; Benjamin was diagnosed at three weeks of age. Katarina, a teacher, worked fulltime up until 2008 when Dominic was born. She worked part-time from 2009-2016 but, since being diagnosed herself with fibromyalgia, she remains at home and devotes her energy and time to her family. The boys, Dominic and Ben, get physiotherapy treatment in the mornings. It’s a daily parade of pills, proper nutrition, rigorous chest therapy and percussion treatment. Dominic swallows up to 27 pills per day. Both boys take mega-doses of vitamins and other medications that help their digestion. “They take prescription pills — they’re digestive enzymes — to help them digest their food,” Katarina says. “Without those pills they would not absorb their nutrients, especially fat and proteins, and that would result in failure to thrive, right from when children are born. “Just to maintain growth, it’s a ton of hard work. People with CF need far more calories and fat and protein than the rest of us.” While most people think of Cystic fibrosis as a lung disease, Shaun says it’s much more. “Yes it is a lung disease — the airways of the lungs fill up with thick, sticky mucous and there’s a greater risk of infection and bacteria growth — but, in our boys’ case, there is also pancreatic issues because the mucous blocks the enzymes from the pancreas so they have to take them (enzymes) orally, which is another full procedure we had to go through with the help of a team and kind of diagnose an issue as we weren’t sure what was causing it. “It’s been good. They’ve been fortunate to be doing well, but it’s another part of the treatment.” Nutrition is also key.
Without those pills they would not absorb their nutrients, especially fat and proteins.
“There’s no skipping snacks,” stresses Katarina. “One of Dominic’s doctors used to say, ‘Eating is not something we do because we enjoy it; for him, it’s work and feels like a chore.’ So there’s a whole other set of issues around family meal time, which is common with CF for families to struggle with their kids. Dominic doesn’t like eating. “For some kids, if they don’t eat, we don’t really worry because we know they’ll eat and they’ll grow fine. But, with kids with CF, it’s just another big stressor.” For the Nechvatal family, every day’s schedule is filled with additional layers of stress. Each day is dictated by cystic fibrosis care. “We average about four hours a day for hands-on therapies, which includes in-house medications and physiotherapy,” notes Katarina. “When they ’re sick, it’s more. It’s a lot.” In an average year, a caregiver devotes four months of full-time work to therapies and treatments. When Jonathan was born without CF, the family was relieved and had dreams of spoiling him. However, when he was five months old, Katarina and Shaun began to worry about his development. They noticed issues with weakness and growth. After he spent a week in hospital undergoing countless tests, the parents were told he had a rare metabolic disorder, for which there was no treatment and no cure, and that no one knew how long he would live. Six weeks later, when he was just over six months old, Jonathan passed away in his parents’ arms due to respiratory failure. As for dominic and benjamin, they face a lifetime of demanding daily routines in an effort to stay as healthy as they can, for as long as they can. A common cold can develop into pneumonia. Bacteria that are harmless to most of us can cause potentially life-threatening infections for people with CF. Both boys have been hospitalized for extended periods of intravenous antibiotics in attempts to control infections that cause declines in lung function. It is a daily struggle to cope with the anxiety that comes with the unknowns of where and when Dominic and Benjamin will catch the bugs that will develop into their next lung infections. “As all parents, we naturally worry about our children’s future and well-being,” the Nechvatals say. “But, because of cystic fibrosis, we must also worry about Dominic and Benjamin having difficulty breathing, repeated lung infections, the struggle to absorb nutrients for normal growth, and other Cf-related diseases like diabetes, liver disease, depression, and early-onset osteoporosis. “We face feelings of fear, grief, anguish, but always stronger are our feelings of gratitude and joy for the gift of our sons, and hope that the control or cure for CF will come soon.” Two older sisters, Eva and Anika, help out in the household where they can. They serve as positive role models for their little brothers. All of the children are active with soccer and basketball, along with swimming lessons. The disease hasn’t stopped the boys; it’s only lengthened their days. “When we first found out, we didn’t know much about the disease,” recalls Shaun. “So, the learning curve was really steep. Fortunately for us, our team at RUH is amazing. We’ve got a lot of really great professionals that support us, from the nurse to the respiratory therapists to the physiotherapists to the nutritionists.” Dominic was the first child who screened positive for CF in Saskatchewan. “Then we were meeting with doctors and nurses, getting information and setting up treatment therapies already at 1 month old,” recalls Shaun. Katarina adds that Dominic had “no symptoms,” so it was preventive therapy and helped establish the regiment hey would face again with Ben. “From there, it became commonplace,” explains Shaun. “We’d sit
We didn’t know much about the disease. So, the learning curve was really steep.
down and do his percussion therapy for a half-hour, just pounding on his chest and lungs so he’d fall asleep. That was his norm. Fortunately for us, if we’re at a table and an event, he’s nine but he knows how to read the nutritional facts on (food) packaging and he knows there’s so many grams of fat and this many enzymes. He’ll call the pharmacy now to refill a prescription for himself.” There’ s more to that independence. “He’s checked himself into the pediatric outpatients department,” notes Katarina … “He’ll pop the mask on himself and say, ‘I’mhere.’“When Cystic Fibrosis Canada was founded 50 years ago, children with CF were not expected to go to kindergarten. Today, Canada has one of the longest life expectancies for people with CF in the world; the median age of survival is 53.3 years.