Running For More Than Miles
Heather Mulye turns every step into resources for families like her own.
By Maggie Nerz Iribarne
Photo courtesy of Heather Mulye
One spring day in 2021, a woman was running alone for about seven hours, circling the paths at Green Lakes in Fayetteville. Eventually, she collapsed to her knees on the beach, sweat pouring, tears flowing, her arms around a little girl. A visitor might have wondered, “who is this woman, who is the girl, why the tears?” This was not an organized race, not a major event. It was one woman running, and a little girl waiting for her at the end of a struggle.
That woman and girl were Heather Mulye and her daughter, Ellie.
Like so many mothers, Heather loves to talk about 13-year-old Ellie and her 11-year-old son, Finnegan.
From Left to Right: Ellie, Heather, Finnegan | Photo courtesy of Heather Mulye
“Finnegan creates the most imaginative stories and can bring them to life with how he tells them. He genuinely cares about others,” Heather said. “Ellie makes an impact when she enters a room. She’s intuitive, spicy, caring … and she just happens to rock an extra chromosome.”
Ellie’s Down syndrome diagnosis thrust the family onto a journey full of challenges, including infant open-heart surgery, extensive speech therapy, and emergency hip surgery, but they’ve also found a deep, life-changing love. Initially scared and isolated by the diagnosis, Heather ultimately turned the situation into a springboard for volunteerism, fundraising, and big-hearted compassion for her community.
This brings us back to the day at Green Lakes in 2021.
Heather was there to independently fundraise for a Down syndrome achievement center called GiGi’s Playhouse. She targeted the goal of $321 and running the distance of 3.21 miles, representing three copies of chromosome 21, the genetic feature that causes Down syndrome. Easily achieving that objective, the funds ended up at $4,000, and according to Heather’s calculations, that scaled up to the distance of a marathon.
“I committed to a [26.2-mile] trail run at Green Lakes while wearing a weighted vest to signify low muscle tone, which happens in individuals with Down syndrome,” Heather said. “I wanted to feel how Ellie feels each day since her body gets tired faster from daily activity. It was one of the hardest things I had achieved up to that point. At its hardest moments, I told myself, ‘At some point this will end. Ellie doesn’t get that. Every day is work for her. If she can push herself … I most definitely can keep going.’”
The center that Heather was fundraising for, GiGi’s Playhouse Syracuse, is part of a national organization that offers free educational, therapeutic and career development programs for individuals with Down syndrome. The local chapter opened a few months after Ellie’s infant heart surgery.
From Left to Right: Ellie and Finnegan | Photo courtesy of Heather Mulye
“They welcomed us with open arms and brought a comfort I hadn’t yet felt, trying to navigate my journey as a first-time mom,” Heather said. “It was so nice to finally hear someone say, ‘Congratulations, your daughter is beautiful.’”
After the Green Lakes marathon, GiGi’s asked Heather if she would teach a new class: GiGiFIT Kids. She jumped at the opportunity and began volunteering.
“Since they had helped us so much over the years, I wanted to give back and help others feel that comfort … Leading GiGiFIT Kids has been one of the most rewarding experiences,” she said.
Beginning with just Ellie and her friend Melanie, GiGiFIT Kids eventually grew so popular that they had to put a cap on the number of kids enrolled.
In 2024, Heather took her mission to “give back” a step further and submitted an application for a grant from her employer, Northwestern Mutual. The grant, which aims to bolster the volunteer efforts of the company’s financial professionals, was given to Heather with $25,000 for GiGi’s Playhouse. She was also recognized with the Most Exceptional Community Service Award.
This past year, Heather stepped away from her teaching and leadership roles, but she has not stopped running and thinking big for the Down syndrome community. Last year, she ran the Walt Disney World Marathon to raise money for the National Down Syndrome Society. She dreams of starting a fitness program for special needs kids and creating a 5K race in Ellie’s name. Heather has learned from her children that one person can have a huge impact on others, a ripple effect that gains momentum with time.
From Left to Right: Ellie, Finnegan and Heather at Walt Disney World Marathon | Photo courtesy of Heather Mulye
“Through all the things Ellie goes through, she goes through them with grace and comes out on the other side with a smile; she doesn’t allow them to dull her shine,” Heather said. “Ellie and Finnegan have inspired me to try and make an impact on others and to become the best version of myself.”
