Annual race, walk seeks to raise money for children born with birth defect
Published 9:45 am Wednesday, May 2, 2018
NILES — Every year, superheroes from across Michiana gather on McCoy’s Creek Trail. Clad in capes, masks and tights, these figures are not here to fight crime, rather they meet collectively for the Superhero Run for Belly Buttons to raise money for a nonprofit that helps children diagnosed with a birth defect called gastroschisis.
This year, the fourth annual event will take place at 9 a.m. Saturday, May 26, at McCoy’s Creek Trail, S. Oak St. in Buchanan. All proceeds from the event will support Avery’s Angels Gastroschisis Foundation.
People are invited to don a superhero costume and run or walk the McCoy’s Creek Trail to raise money for the nonprofit.
Event coordinator Bethany Cowan, of Buchanan, said she had not heard of gastroschisis until she was pregnant with her daughter Cecelia. Before her birth, Cowan was told that her baby had the birth defect where the organs appear outside of the body because of a hole in the baby’s abdomen.
Leading up to Cecelia’s birth, Cowan said she could find little information about gastroschisis, until she heard about the nonprofit organization Avery’s Angels. The organization was founded by a mother whose son died from complications of the birth defect.
Through Avery’s Angels, families with gastroschisis can receive care packages and funding for hospital travel. Additionally, the organization promotes research and awareness of the disease. For Cowan, Avery’s Angels also provided a support network that connected her with other people who understood what her family was going through.
“They were incredibly hopeful for us,” Cowan said. “You just kind of need someone to hold your hand. People look at you like you have four heads when you tell them what your child will be born with.”
When Cecelia was born, life at first was a little tumultuous. After 21 days in the NICU in Bronson Hospital in Kalamazoo and a corrective surgery, Cecilia went home with a scar in place of her belly button, earning her the moniker Belly Button Superhero.
Today, Cecelia is an energetic 8-year-old. While Cowan said they have to keep a close eye on her because she is more susceptible to illness, Cecelia lives a normal life.
“Cecelia is a light. She is the kindest, most sensitive kid I have ever met,” Cowan said. “She understands things beyond her years. I feel very, very blessed that God picked me to be her mom.”
Cowan said she recognizes that Cecelia has been lucky. According to her research, 40 percent of children with gastroschisis are readmitted at some point.
For the past four years, Cowan has sought to give back to Avery’s Angels for supporting her.
“Avery’s Angels is 100 percent donation funded as well,” Cowan said. “And there is no real attention being brought to this. At that time, the idea came to give back through a 5K run.”
Since starting the event, the 5K has raised more than $11,000 for the nonprofit. This year, Cowan said she hopes to raise at least $5,000 to support the cause. She said a challenge to raising money each year is that many people do not know what gastroschisis is.
Through the event each year, Cowan hopes to change that. The event has also traditionally drawn other families whose children were born with the defect to join in supporting Avery’s Angels.
Cowan thanked the city of Buchanan for supporting the event. She encouraged people to embrace their inner superhero and support the event.
“You can directly see how your donation will affect families of kids born with this condition,” Cowan said.
To be a superhero for Avery’s Angels:
- Pre-register at active.com or at 8 a.m. May 12 at the event
Cost: $25 for adults, $20 for those under 18, free for children 12 and under
For more information about Avery’s Angels: AverysAngels.org