By Chris Rogers | June 11, 2022
For most of her life, Paula Muller has been a runner. Growing up an avid mountain biker in Canada, she took up running in her early 20s during the winter when it was too cold and rainy to venture up into the British Columbian hills.
Decades later, she has 20 half marathons and six marathons under her belt. But this March, completing the New York City Half Marathon meant more to her than usual. She had decided to run the race for a cause, raising more than $15,000 for the Dandy-Walker Alliance in honor of her son, Andrew.
Andrew was born in 2006. During Muller’s pregnancy, doctors thought they found fluid in the back of his head and neck, but scans and tests returned no signs of malformation.
“Nothing conclusive was found, so we didn’t really think much of that,” Muller said. “But then we had him, and it was pretty clear right away that something was amiss. He had trouble physically: he didn’t sit up when it was typical, he walked late, those types of things.”
Ultimately, Andrew was diagnosed with autism and began 25 hours of in-home therapy per week – physical, occupational, speech, and floor time. According to Muller, Dandy-Walker wasn’t even on their radar at all.
Then, at two and a half years old, Andrew had strabismus, a misalignment of the eyes causing them to turn inward toward each other. Before performing surgery, the eye doctor ordered an MRI to confirm it was a muscular issue rather than neurological.
The MRI came back with a surprising result: Andrew had Dandy-Walker Variant.
“It was kind of an incidental finding, but it explained so much to us,” she said. “Once we understood more about it, the physical delays, the social delays, that sort of came with the diagnosis.”
By second grade, Andrew no longer qualified as autistic, “falling off the spectrum” as he grew socially and intellectually. In hindsight, Muller says, the doctors see autism as a misdiagnosis, with many of his early struggles instead caused by Dandy-Walker.
His Dandy-Walker diagnosis allowed him to continue with some physical and occupational therapies, and he now excels in school, far exceeding the expectations and concerns his parents had early on.
A few years ago, his neurologist suggested he take up rowing to help work out both sides of his body evenly. Now, Andrew, who will turn 16 in July, is an avid rower on his school’s team.
While Andrew found his athletic calling on the water, his mother has made it an annual tradition to run the New York City half marathon. Though now living in Connecticut, Muller is still a Canadian citizen, meaning she can gain admission to the race through a lottery that favors international entries.
A decade ago, when Andrew still appeared to be on the autism spectrum, Muller ran the New York City Marathon to raise money for Autism Speaks. Leading up to this year’s race, she decided to run for charity again, putting her half marathon efforts toward a newer cause near and dear to her heart: Dandy-Walker.
“I’ve been running the New York Half Marathon for years, and it just occurred to me, what if [I ran for Dandy-Walker]?” she said. “I was already in the race so I didn’t have to do the charity to get in, but I thought what if I reached out? Why not?”
She reached out to Dandy-Walker Alliance Founder & President Eric Cole, who set up a fundraising page highlighting her efforts and Andrew’s story. At first, she just shared the page on her personal Facebook, yielding moderate success. But fundraising really took off when she began emailing her friends, family, and colleagues, and got her husband, Tom, to share it at his company, Freepoint Commodities.
Her Dandy-Walker fundraiser was selected as the company’s charity of the month, as Tom encouraged all his colleagues to donate. Freepoint ended up matching all the employee donations, totaling more than $5,000.
Muller didn’t have a fundraising goal in mind when she started her efforts – she just wanted to raise awareness and bring in any money for research that she could – but she was “blown away” with the response she got and how quickly things took off.
“Once you start raising money and it’s coming in, you just keep going, and it kind of takes on a life of its own,” she said.
In all, Muller raised $15,618 for Dandy-Walker research funding and awareness events and programs. But for her, the most rewarding part wasn’t the money, but rather the feeling that with every step she took during the race, she was making an impact on families just like hers.
“Above the money and everything that we raised, so many people reached out and had so many supportive things to say,” she said. “When I was running that race, I just felt different. Like I know it was hard, and there were times near the end that I wanted to stop, but there was something else that took over. At the end, I had tears in my eyes. It was just a beautiful thing to be able to have done for Andrew and all the other kids with Dandy-Walker.”
Want to make an impact? You can host a Dandy-Walker Alliance fundraiser today! Email Executive Director Chris Rogers at firstname.lastname@example.org to set up your personalized fundraising page.