TORONTO – The support and insights others offered to Clint Hurdle and his wife Karla after their daughter Madison was diagnosed with Prader-Willi Syndrome, a rare genetic disorder, helped the couple through a difficult time, and they’ve been committed to paying that help forward ever since.
That’s why two hours before the start of his team’s 7-1 loss to the Toronto Blue Jays on Sunday, the Pittsburgh Pirates manager interrupted his daily routine to meet with a group of 80 people assembled by the Ontario Prader-Willi Syndrome Association.
Hurdle spoke to the gathering “to share experience, strength and hope,” mingled with guests afterwards and signed autographs.
“We’re fortunate we’re blessed in a lot of different ways,” Hurdle said in an interview before the event. “As Karla and I look at it, we’ve been given an opportunity to be a spokesfamily. We do have a soapbox to stand on and a pedestal to use properly to bring awareness, to help raise funds, to get involved in different communities across the nation, to help support families.
“We’re fortunate we have funds that maybe some others don’t, so we feel the need to help raise funds for other families so they can plug into and seek help and support mentally, physically, spiritually or financially.”
Prader-Willi Syndrome occurs in one of every 15,000 live births when a mutation occurs on one of an individual’s two chromosome 15s, leading to issues with appetite, growth, cognitive function and behaviour. One of its hallmark characteristics is a feeling of insatiable hunger which combined with a slowed metabolism can lead to obesity.
The Foundation for Prader-Willi Research Canada estimates that 2,600 Canadians have the disorder.
The Ontario association offers things like free fridge locks, webinars, resources and counselling while also developing a network of people, families and caregivers can draw upon for support. There are social activities, too, and executive director Jennifer Coens, a Blue Jays fan, had long wanted to bring the group to Rogers Centre to watch a game.
When she saw the 2017 schedule included a visit from Hurdle and the Pirates, “I couldn’t turn down such a great opportunity,” said Coens. “Clint’s been fantastic. He got back to me in an hour (when she first suggested the idea). This is obviously a cause near and dear to his heart.”
Hurdle is active with the Prader-Willi Syndrome Association USA and is highly regarded in the community as one of its most prominent spokespeople. Former Pittsburgh Penguins coach Mike Johnston’s niece also has the disorder and he’s participated in fundraisers. Actress Mayim Bialik wrote her doctoral thesis in neuroscience on Prader-Willi Syndrome and is also active in building awareness and fundraising.
“It’s so inspirational for a parent with a child with PWS to see that you can still have a prominent position and job and have a successful career,” said Coens. “For parents it’s big to see that aspect of things.”
With a commanding presence and gregarious nature, Hurdle is an easy person to rally around, something he recognizes.
“It goes to show that it doesn’t matter who you are, you can be touched with the challenge and adversity of a child being born with a birth defect,” Hurdle said. “I just want to look at them and love on them and tell them, ‘You know what? It’s going to be OK. There are going to be hard days, but there are going to be good days.’ Maddie is going into high school this year at the age of 15, and she’s doing girl things and she’s brought a lot of joy into our lives. She’s also given my wife and I an opportunity to probably get closer than we may have been able to get on our own because we’ve got to support one another in a different fashion.
“There are a lot of moving pieces involved. You can make it work. We’re making it work.”
The Hurdles also have a 12-year-old son, Christian, and one of his messages to families is to make sure that the siblings of affected children get the appropriate attention, too.
Madison follows the Pirates very closely, is up on their stats and current performance levels and cheers the players in the team’s family room after games. On days when Hurdle goes a little too far with the umpires and gets tossed, “she’s very emotional when daddy gets thrown out.”
“Maddie is a beautiful girl,” said Hurdle. “She’s 15 but there are parts of Maddie that are probably going to be at a sixth-grade level the rest of her life. I don’t know if Maddie is ever going to live outside the house. There are kids who grow up to live in group homes, there are kids who get on buses and go to work at Walgreens or at Target and have support jobs and do things. They have a lot of the same wants all kids want – independence, responsibility, relationships – so we’re growing through that.
“She brings a lot of joy at a lot of different levels, and also some very ‘Maddie Moments,’ as we call them, ‘Mattitudes’ that she can bring that people who have a special needs child can understand. We’re in our own fraternity with a special needs child, but the joy she has for the simple things in life helps us keep things simple and not complicate things.”