By Heather Tunstall, guest contributor, Tunstall Content
Six years ago, Elyse DeCanio and her family noticed something wasn’t quite right. She had been experiencing abdominal pain more than the average kid. She was allergic to dairy, eggs, and animal fur, but had taken the right precautions and had the allergies under control. This was something different.
“My stomach kept constantly hurting and we didn’t know what was wrong,” said Elyse, now 10. “We went to multiple doctors, they thought it was stress or something else. We got to the GI doctor and they did the scope and we found out I had celiac at four years old.”
For three years, Elyse did oral immunotherapy for her egg and milk allergies, eventually able to add eggs to her diet. She can also have milk in baked goods, and she has allergy shots to keep her reactions at a minimum. However, she is completely gluten-free to combat her celiac disease.
“It was a huge challenge because most gluten free things have egg in them,” Elyse said. “We’ve learned a lot throughout the process.”
Now, six years later, Elyse has a good handle on what she can and cannot eat to stay healthy. She’s passionate about sharing the truth about what celiac disease is with others.
“One of my favorite YouTubers has celiac and people will say, ‘Oh yeah, I’m also on a gluten-free diet,’ but it’s not really a diet, because we don’t have a choice,” she said. “It actually does a lot more to you than hurt your stomach.”
Elyse’s mother, Yulon, became familiar with the Step Beyond Celiac 5K program in 2019 and encouraged Elyse to participate. The program not only raises awareness of celiac disease and what it is, but also raises funds for research and advocacy.
Having been familiar with fundraising for other programs in the past, Elyse’s family set a goal to raise $5,000. They began asking everyone they know in their Frisco, Texas, community to participate and walk with them in their local Step Beyond Celiac 5K efforts, with Elyse as the focal point and face of the campaign.
“The community is very family oriented,” Yulon said. “The school district houses 60,000, and 80% of the population is under 12. We were able to connect with other celiac families and it took on a life of its own — we wanted to support Elyse and our family.”
The DeCanio family and team went all out. They had T-shirts and signs made, they did a raffle and posted it on YouTube, they secured sponsors including Kona Ice, and hosted a silent auction. All of the money they raised went to the Step Beyond Celiac 5K campaign.
Elyse was the driver of the fundraising, Yulon said.
“She went out to the community with me and wrote her letter and story and got around local businesses and companies,” she said. “The kids put their feet to the floor and sold raffle tickets, and we did an event with her school.”
They fundraised for five weeks, with the support of their team to help raise awareness.
“None of our team members actually raised money on their own, it was really raised by Elyse by going out and getting donations,” Yulon said. “We had 25-30 people who walked with us.”
At the end of the five weeks, Elyse raised $11,015. She was far and away the top fundraiser in the 2019 Dallas area campaign.
“We know the more money that goes to research, the quicker they find a cure or information to help better the lives of people with Celiac,” Yulon said.
Elyse says she wants other people with celiac disease to know that they’re in this together.
“I want them to know that you’re not alone and it’s not by choice,” Elyse said. “I’m glad I have celiac now because if I didn’t have Celiac, I would be eating a lot of things with gluten in it and that would be very unhealthy. There are a lot of great foods to eat.”
To learn more about the Step Beyond Celiac 5K program, click here.