Bennett Huibregtse was born prematurely with a rare kidney disease that causes cysts to grow inside the kidneys. But he never let the genetic disorder get in the way of him having fun.
A joyful child known for his infectious smile, the South Fayette resident loved to swim, ride horses, eat ice cream and take rides in a trailer behind his father’s bike on the Montour Trail — despite enduring 20 surgeries, including the country’s first paired kidney donation involving a child in July 2009.
“He had so many challenges, but it was if there were no issues. All he did was smile through everything,” says his mother, Kristin Huibregtse, recalling those happy outings with giant smile of her own. “He loved his life.”
So when Bennett unexpectedly died at age 16 from liver disease in July 2020, the couple decided to share his grin with the world by launching a nonprofit the following December offering all the things their son grew up enjoying.
It’s called Always B Smiling, and its cornerstone is free, adaptive family bike rides on the trail for kids and young adults with disabilities and health challenges. Piloted and guided by trained volunteers, the 9-mile rides are offered Saturdays May through October at Tandem Connection at Montour Trail Milepost 27 in Hendersonville. They end with ice cream and crafts at a pair of picnic tables set up just off the trail, in the bike store’s parking lot.
“We went to the Montour Trail with him our entire lives, for something to do as a family,” Ms. Huitregtse says. Affording others the same opportunity aboard three electric Duet Wheelchair Bicycle Tandems not only keeps Bennett’s legacy alive but also affects those in a similar situation in a very big way.
The Huitregtses quickly realized the kids weren’t the only ones who loved the rides — parents, siblings, grandparents and other caregivers walk away with smiles, too.
“It’s one of our few family activities,” says Gretchen Hutt of Brighton Heights, whose 17-year-old daughter, Sophie, was one of two early-morning riders on July 9. It’s tough to find places her nonverbal and nonambient child, born with a rare chromosome deletion, likes and feels comfortable in — and just packing the car to get there is also a challenge.
Always B Smiling’s bike program, Ms. Hutt says, is perfectly set up for Sophie because “everyone understands her needs, and they’re excited for her to be there.” Plus, it’s fun for all involved, which that Saturday included her 14-year-old Lucy Hutt, her father, Dennis, and Sophie’s grandma, Alex Knoebel of Hampton.
“It’s the one place we go where we don’t have to worry about anything,” she says.
“There’s a built-in support system,” agrees Kathy Sapko of Bethel Park, whose daughter, Nicole, was on her fifth ride.
Nicole, who has cystic fibrosis, is very quiet normally, raising her voice only when she’s unhappy or trying to get attention. But put the 33-year-old quadriplegic on a bike being piloted by Dean Huibregtse? She’s a total chatterbox.
“Every time someone called, ‘On your left’ as they passed, she’d talk too!” says Gordon Sapko with a laugh. “She loves this and was so happy going out, with the biggest smile on her face.”
The couple worried that because Nicole, who has cystic fibrosis, was older, they’d be turned away. “But they treat you like family,” says Mrs. Sapko, even sending pictures of her adventures to family and friends.
The Huibregtses love them right back, along with their core group of 15 volunteers who pilot and ride alongside participants each Saturday, sometimes for both sessions. The couple has gone from hosting around 40 rides their first year to an expected 100 rides this season, thanks to a bike donation from Alan and Bunny Schorr of Mt. Lebanon.
The couple cared for Alan’s brother, Robert, until he passed away from cerebral palsy at age 84 in 2021. Providing Always B Smiling with a bike in his name, says his wife, allows them to pay their experiences forward.
“If you give, you get back,” Mrs. Schorr says, noting that Robert, like Bennett, always had a smile.
Seeing the bike in use, she adds, was extremely gratifying. “It’s a positive force to share our experience.”
What’s really awesome, says Ms. Huibregtse, who worked for Heinz in sales and marketing before starting the group, is that many of their yellow-shirted volunteers come from places that served Bennett so well over the years, including The Watson Institute and The Western Pennsylvania School for Blind Children. Tandem Connection has also been a big partner and asset in their success, allowing the group to set up a small red barn on the trail to hold supplies and a much-needed, private changing table for participants. The bike shop also stored their bikes in the winter.
Kerrin Hetland of South Fayette, whose husband, Scott, designed the nonprofit’s website, considers her job of handing out ice cream after a ride and overseeing crafts a “calling” for her former neighbor “Bennie.”
Not wanting to limit their support to just Saturday trail rides, the nonprofit also has teamed up with the nephrology department at UPMC Children’s Hospital — where Bennett spent so much of his childhood — to provide programming, activities and supplies for families and patients. Its Buddee Bag Program, for instance, provides kids undergoing treatment with coloring books, stuffed animals and other items; on Aug. 3 they’re hosting a trip to PNC Park to see the Pirates. They also do bike rides for birthday parties and small school groups.
Ms. Huibregtse says ABS’s ultimate goal is to build an activity center on the trail on a donated lot that in addition to housing the biking and other programs, would provide life skills training for kids with disabilities via a trailside cafe they’d be responsible for staffing. The group has already raised nearly half of the estimated $800,000 price tag through grants and fundraising, and is in the process of working with Peters on the necessary variances and approvals. She and her husband hope the “Miles for Smiles” 5K walk it’s holding at 9:15 a.m. on July 24 will help close the gap.
Registration begins at 8 a.m. at TAR Outdoor Storage on the trail in Canonsburg, and activities afterwards include bounce houses, a petting zoo and snacks from Millie’s Ice Cream, Gasoline Street Coffee and Dunkin Donuts.
The couple still miss Bennett every single day, but their nonprofit work “is the closest we can get to seeing that smile again,” says Ms. Huibregtse. “You have two choices in life when you face adversity. You can go down a deep dark hole or get busy living.”
“We’ve lived it for so long, we really don’t know anything other than being together and being on the trail,” agrees her husband. “It’s our life’s work and way of giving back.”
And because complete strangers on the trail smile and wave when one of their participants ride past, “I know it resonates.”
Gretchen McKay: gmckay@post-gazette.com, 412-263-1419 or on Twitter @gtmckay.
First Published: July 17, 2022, 10:00 a.m.