NORTH HAVEN — Emelia Brandi, a local 10-year-old, has been named the pediatric hero for the Crohn’s & Colitis Foundation Connecticut chapter’s annual Take Steps Walk.
The chapter chose Brandi after hearing the story of how she was diagnosed when she was just 6 years old.
“In the spring of first grade she started to show symptoms,” said Todd Brandi, Emelia’s father. “We went to a pediatric gastroenterologist and initially it didn’t go right to ‘You have ulcerative colitis.’ Then things got progressively more symptomatic.”
She wasn’t able to go to school and, at one point, was “going to the bathroom upwards of 30 times a day.” Sarah Brandi, Emelia’s mother, said that it took five months for the family to get a diagnosis.
“When I first got it, I was really nervous because I was like ‘Oh my God, why am I feeling this way?’ But once I started taking the medicines, I started feeling much better and healthier,” Emelia Brandi said.
She now plays travel hockey as well as softball and watersports, such as paddleboarding, wakeboarding, waterskiing and is learning how to surf.
Brandi said that being named the pediatric hero makes her and her family “feel pretty good.” She gave a speech at the kickoff to fundraising in June and will give another at the Take Steps Walk.
“I get to help other kids know that it’s going to be fine because I could get through it, so you can get through it too,” she said.
Ulcerative colitis is one of two main inflammatory bowel diseases, the other being Crohn’s disease, that effects one in 200 Americans, according to the Crohn’s & Colitis Foundation. Ulcerative colitis causes inflammation in the colon or large intestine whereas Crohn’s typically targets the colon or the last part of the small intestine, according to the Mayo Clinic. Symptoms can include abdominal and rectal pain, diarrhea, fatigue and weight loss.
Symptoms can vary depending on the person.
“I had joint pain for four years and arthritis is also an auto immune disease,” said Pamela Bergantino, a volunteer lead for the Connecticut chapter of the Crohn’s & Colitis Foundation who was diagnosed with Crohn’s disease. “So they were treating me for arthritis. The medication was hiding the typical stomach symptoms associated with Crohn’s.”
The goals of the Crohn’s & Colitis Foundation is to find a cure and to improve the quality of life of those who suffer from the diseases.
The Take Steps Walk will be held Sept. 14 at Hammonassett State Park in Madison, just 10 days after Brandi’s 11th birthday. The walk will feature a festival with games and costumed characters as well as different tents set up by the foundation and pharmaceutical representatives.
As of Aug. 30, the Connecticut chapter raised over $30,000 for the Take Steps Walk. The Brandis hold the top spot for fundraising with over $5,000 going towards the Crohn’s & Colitis Foundation. They also raised an additional $2,500 for Brandi’s 10th birthday, which was matched by a “benefactor” from New York.
“There are so many young kids getting diagnosed with this, maybe they’ll see her story,” said Todd Brandi. “It’s a disease that if you look at them, you can’t tell that somebody might be struggling with it. So especially for young kids to be able to talk with other kids so you know you’re not alone.”