By BRENNA GRITEMAN
LEIPSIC — Plenty of Make-A-Wish kids ask for a day at the ballpark or a trip to Disneyland.
Others, however, wish for something a little more … permanent.
Such is the case for 5-year-old Evelyn Tussing, whose Leipsic family is working with Make-A-Wish Ohio, Kentucky and Indiana to acquire a horse.
But this isn’t an incidence of the family owning the horse but boarding it nearby. Per Evelyn’s wish, the Tussings are in the process of adding a proper corral, barn and stables to their 2-acre Putnam County property. The folks at Make-A-Wish are aiming to deliver her horse sometime next summer.
And in the meantime, Evelyn is taking riding lessons at nearby Challenged Champions of Ottawa, where the bouncing action of riding a horse helps break up the mucus in her lungs caused by cystic fibrosis.
Mom Kelly has become a regular volunteer at the nonprofit therapeutic riding center, and big sister Olivia, 11, has started riding, too. Brother Everett, 9, is still on the fence about the whole thing, while Dad Aaron is brushing up on his stable building skills.
Catching the ‘Spirit’
Evelyn was born at Bluffton Hospital in spring 2014. When she was just 10 days old, Kelly and Aaron got a call from their family physician, who had noticed some abnormal results in Evelyn’s newborn screening.
They were told Evelyn has cystic fibrosis, a genetic and fatal disease that affects a person’s lungs and digestive system. Neither Kelly nor Aaron knew they were carriers of the disease.
Kelly explained that people with cystic fibrosis have an excess of mucus in their body, making it difficult to fight off illnesses and properly digest food and absorb the nutrients and fats from food. Most patients cough a lot and appear thin.
At 14 days old, the Tussings met with Evelyn’s medical team at Toledo ProMedica Children’s Hospital. She started with inhaled medications and manual chest percussion. Today, Evelyn takes over eight medications a day and has a Hill-Rom vest that shakes her body to help break up and expel the mucus. She is hooked up to her breathing machine and vest for over 90 minutes a day when she’s not sick, with treatments approaching five hours daily when she is ill or showing signs of a cold. She visits the Cystic Fibrosis Center of Northwest Ohio in Toledo every eight weeks and sees over five specialists.
Kelly says at the time of Evelyn’s birth, the average life expectancy for a cystic fibrosis patient was 35 years. The life expectancy is now 40-45 years.
Evelyn’s love for horses started about two years ago, when she came across the movie “Spirit” while watching her tablet during a treatment session. That led to many hours watching horse-related videos on YouTube, followed by a few horse-themed birthday parties and a visit to a miniature pony farm.
When it was time to make her wish through the Make-A-Wish Foundation, a horse seemed the only appropriate choice.
Specifically, Evelyn wants an appaloosa — a breed best known for its colorful spotted coat pattern. She wants to ride, brush and read with the horse, and she wants to run with it in her own yard.
And she’s already suggested to her father that every horse needs an equine friend or two to keep it company …
A unique wish
As Evelyn’s passion for horses continued to grow, Kelly and Aaron were thrilled to learn about Challenged Champions, serving veterans and individuals with special needs.
She started riding in April, and the family quickly learned that bouncing on the horse while riding can help break up mucus in her lungs, making the decision of pursuing horse ownership a bit easier. And, Kelly said, spending time at the facility helps her young daughter feel a sense of normalcy.
“Evelyn is able to ride with other individuals that are possibly feeling the same as Evelyn does from time to time: different, alone or excluded,” she said.
Kirby Wierda, assistant director at Challenged Champions, reports that Evelyn is fearless with the horses and likes to go fast.
“She has a horse calendar at home that she crosses off the days until her next lesson on,” Aaron said.
Kelly, too, has discovered that she likes spending time around horses and observing their different personalities. She is training to be a horse leader and says that volunteering at Challenged Champions has been endlessly rewarding.
And, as a family that knew nothing about horses — her grandfather had race horses but that’s the extent of Kelly’s equine experience — the agency has been an invaluable learning tool.
“Who would have thought, when she was born and diagnosed with cystic fibrosis, that five years later we’d be getting a horse,” Kelly said with a laugh.
Katie Ferrell, communications manager at Make-A-Wish Ohio, Kentucky and Indiana, said the foundation will work with as many community partners as possible to make Evelyn’s wish come true. This includes working with experts in northwest Ohio to determine the best horse for the family, and also to acquire necessary equipment.
Ferrell said any child with a critical illness, age 2½ to 18, can apply to Make-A-Wish. She noted the agency is not a last-wish organization, and in fact 80% of kids survive and thrive after their wish is granted. The Ohio, Kentucky and Indiana chapter is the largest Make-A-Wish chapter in the nation and grants over 800 wishes a year. Sixty of those wishes were granted in northwest Ohio last year.
The most common wish for kids is a Disney vacation, Ferrell said. A horse, on the other hand, is a little more unexpected.
“It’s not the first time we have gotten this request, but it is unique,” Ferrell said of Evelyn’s wish.
So far, Tim O’Malley of Michigan has donated a horse trailer to the family, and friends and family members have helped in paying ahead on Evelyn’s lessons at Challenged Champions.
Evelyn started kindergarten this year at Leipsic Elementary. Aside from horses, she likes coloring, Play-Doh and Barbies. Her Barbie house, naturally, is a horse barn.