By the way 8 year-old Ella glides across the ice in her skates, you would never guess the struggles she'd had to overcome.
Ella Wintringer gets skating lessons from her coach four times a week. In addition to her passion for the ice, her extra curriculars include swimming, navigating a home with two younger brothers and being an advocate for motility disorders.
Her rare diagnosis has made her a spokesperson of sorts, even settling the fears of other young girls across the country to undergo her same treatment plan.
At the age of three, Ella developed an extremely bloated abdomen. "It looked like a balloon that would pop if you were to touch it," says Jamie Wintringer, Ella's mother. Ella lost her appetite and no longer was able to produce a bowel movement. This landed her in the ER, where doctors found a gallon of fluid in her abdomen.
"There was so much uncertainty in the process. Tests we knew nothing about, results we didn't understand," recalls Nathan, Ella's father. It took three years of traveling across the country to various specialists to finally fully diagnose Ella. Ella has colonic neuropathy pseudo obstruction, which essentially means her tract from colon to her rectum don't function correctly.
The 8 year-old wears an ostomy bag and a supportive belt to bypass the parts of her tract that do not work. The bag is almost undetectable underneath Ella's shirt and sweater; her effortless performance across the ice doesn't offer any clues to its existence either.
"She just acts like an everyday kid," says Jamie, who stays at home to care for Ella and her two brothers. Jamie decided to stay home after trying to balance the possibility of a medical emergency, doctor visits and a bustling activity schedule for her three children.
Seeing Ella live a normal, action-packed life has inspired Brie, a young girl from Wisconsin, to get the same surgery Ella had. The two share a diagnosis that only about 200 children receive each year.
Brie and Ella will both get to forget their diagnoses for just a little while thanks to the partnership between the Make-a-Wish Western New York and Make-a-Wish Wisconsin chapters. The two girls and their families will go on a vacation in early 2017.
The trip provided by Make-a-Wish is more than just a vacation; it empowers children to fight against their diseases and improves the quality of life for them and their families.
To read more about Ella's journey, you can read here.
If you'd like to help Make-a-Wish WNY grant more wishes to help children like Ella, please donate to our 'Wish Battle' fundraiser by visiting Make-a-Wish WNY.
