They entered for the sake of Chance – and won

This story was supposed to let readers know about an 8-year-old special needs boy’s “chance” to win an adaptive bike.

Well, the boy, whose name is Chance Van Duyne, is now getting his bike, a Duet Wheelchair Tandem Cycle.

And his mother, Carrie Van Duyne of Wilmington, wants readers to know they can help other children like him.

The Great Bike Giveaway, hosted by the nonprofit Friendship Circle, gives kids with special needs three opportunities to receive a bike that’s right for them.

1. The registrant with the most votes in their selected bike type will receive that adaptive bike for free.

2. Anyone with 50 or more votes will be entered into a drawing to receive the bike they selected at the time of registration. Anyone who receives at least 50 votes will automatically be entered into a drawing for the bike they selected when registering.

3. If a registrant doesn’t win by vote or random drawing, he or she can fundraise through the platform to receive a bike.

Chance, who has autism and Duchenne muscular dystrophy (a genetic disorder that causes progressive muscle degeneration) was not in the top five, but he needed to raise $4,670 of the bike’s cost of $5,000. He reached that amount Thursday evening.

Carrie was thrilled and humbled, but she was not surprised.

“Chance was diagnosed in 2015, and we’ve just had an insane amount of support from everyone in Wilmington. It’s been really cool,” Carrie said.

How did Carrie hear about the contest? Through her friend Tara Phelan of Wilmington.

Phelan’s daughter Shay, 5, won an adaptive bike through the random drawing in May 2016. Phelan said she had heard about the Great Bike Giveaway when it appeared in her news feed on Facebook.

So Phelan ran the contest past Shay’s therapists, who confirmed its validity and encouraged her to enter, which Phelan did.

“She likes being outside, and I knew she would not be able to ride a regular bike,” Phelan said. “I wanted to give her an opportunity to be outside and do normal kid activities.”

Shay’s epilepsy has caused global developmental delays, Phelan said. She cannot talk and can walk only with assistance, Phelan added.

When Shay rides the adaptive bike, Phelan mostly pushes and Shay mostly rides, Phelan said. However, Shay can pedal very short distances by herself, which is good for her muscles, Phelan said.

“We go out for one bike ride a day in the summer, sometimes more than once,” Phelan said. “We don’t go very far – she doesn’t have the endurance – but we try to make the most of the generosity of getting this bike.”

Many people don’t realize that, while insurance may pay for medical expenses, it doesn’t necessarily cover adaptive, non-medical equipment, Carrie said.

But for Chance, who loves to go on bike rides and can’t, the tandem cycle will help return some of his quality of life, Carrie said.

It’s been a process for Carrie to learn she’s a carrier of DMD. After her aunt died of heart complications in 1996, Carrie’s cousin, who died in 2005, was diagnosed with DMD. They believe Carrie’s aunt was a carrier as DMD comes with the risk of heart issues.

Carrie said she wanted to undergo genetic testing, but the test costs $10,000 and insurance didn’t cover it. She did consult with a genetic counselor, who felt Carrie had only a “chance” of being a carrier, Carrie said.

Chance’s brother Zander was born in 2010 and has no signs of the disease, Carrie said.  But with Chance, Carrie felt the signs were there.

Chance had enlarged calf muscles (which is caused by abnormal tissue) and did not walk until 17 months. By 20 months, Chance was enrolled in speech classes. The autism was “pretty clear,” Carrie said, even though Chance did not yet have an office diagnosis.

Meanwhile, DMD nagged in the back of Carrie’s mind.

So, in the spring of 2015, Carrie called her general practitioner and asked for a some testing, just for peace of mind, she said.

“Unfortunately, it was the one time in my life I never wanted to be right,” Carrie said. “And I was right.”

The “worst part,” Carrie said, was finding specialists who treated DMD and then trying to squeeze into their full schedules.

On Sept. 17, 2015, Chance had both his diagnoses. He turned 4 on Sept. 23. Carrie’s father died suddenly on March 23, so the family has gone through rough times on many levels.

Still, Carrie feels their professional backgrounds helped them cope.

Carrie is a former teacher; she has a degree in counseling with an emphasis in grief counseling. Her husband, Brent, is a pharmacist.

“But it was still life changing,” Carrie said. “Life will be shorter for Chance than we would like it to be, but we want to give him as much joy as possible.”

Carrie is encouraged that more treatments are available to treat DMD than when her cousin was alive. But there’s still no cure for DMD, which is why Carrie and her family and friends have worked hard to raise money for research. Carrie said they have been able to raise about $20,000.

Raising a wheelchair-bound child who will never walk means remodeling a home to accommodate the disability. But making those adaptations can be expensive and, again, insurance doesn’t cover those costs, Carrie said.

Family get-togethers can be challenging, Carrie said. The autism makes certain situations overwhelming for Chance.

So, sometimes Carrie will stay home with Chance while Brent takes Zander to a venue he enjoys, like Sky Zone. And vice versa. They make sure Zander gets plenty of “one-on-one” time with each parent. And Zander likes interacting with Chance, she said.

Sometimes the family also will attend an event together. Zander enjoys the activities and Chance enjoying watching the people at these events.

That is the upside to raising a son like Chance.

“He does find joy in all the little things,” Carrie said.

Those “little things” include listening to music, swimming in the family’s backyard pool and going for bike rides.

Unfortunately, the steroids Chance is taking to control the DMD greatly increased his weight, to the point that Carrie could not “pull him around” last year.

That won’t be the case with the new bike.

“It holds up to 275 pounds,” Carrie said. “So he’ll be able to use it into adulthood.”

Now that Chance will receive his bike, Carrie is encouraging people to help the other registrants receive their bikes, too.

For people who can’t donate, simply showing up to vote can tremendously help a family feel supported and less alone, Carrie said.

“Scroll through the different kids and read their stories,” Carrie said. “It’s pretty touching.”

To vote and for information, visit greatbikegiveaway.com.