Watch: Jim Boeheim puts on Mickey Mouse ears to help dole out Make-A-Wish trip to Disney World - syracuse.com

October 22, 2019 at 09:58AM

Syracuse -- Sophiona Shelley isn't a huge sports fan. Since Sunday, though, she's wanted to be a cheerleader.

The 6-year-old was the latest to benefit from Make-A-Wish Central New York, receiving a trip to Disney World from the organization during a ceremony that prompted Syracuse men's basketball coach Jim Boeheim to don a pair of Mickey Mouse ears.

"Finally, something that looks good on me," the head coach quipped as he slid them onto his head.

Sophiona received her gift at the Ms. Orange Fan Luncheon on Sunday. The event, which has been held for the last 28 years, was the brainstorm of Boeheim, even pre-dating the creation of the Jim and Juli Boeheim Foundation, one of the area's most prominent charities.

The Ms. Orange Luncheon has grown into Make-A-Wish CNY's biggest fundraiser each year.

Sophiona Shelley, left, is headed to Disney World thanks to Make-A-Wish Central New York. She's joined in this photo by Otto the Orange and wish sibling, Zoe.

Sophiona, a first-grader at Lyncourt School, was diagnosed with juvenile dermatomyositis in 2015. The autoimmune disease is rare. Sophiona's mother, Heather, said the disease is similar to Lupus. During flare-ups, Sophiona's own body might attack her muscle tissue and organs.

The disease is so rare that doctors have had a difficult time providing a prognosis or a good idea of what will come next. In some cases, the disease goes into remission. In others, the attacks can be fatal.

Heather said the disease first expressed itself as a rash on Sophiona's face but, by the time it was diagnosed and they began treating it, Sophiona had lost the ability to walk.

Sophiona has had ups and downs in her experience but she's doing well right now. The only medicine she takes at the moment is one for arthritis, and she wears hats and rash guards to protect her from the sun, which can bring on symptoms.

Through it all, she has remained happy and upbeat. It was her outgoing personality that convinced Make-A-Wish organizers that she'd enjoy the public surprise on Sunday, which included joining Jim and Juli Boeheim on stage for the big reveal.

Diane Kupperman, the president of CNY Make-A-Wish, said organizers wondered how the coach would feel about putting on the mouse ears when they planned the event. She asked for Juli's advice.

It was no surprise that Boeheim, always gracious in those moments, was willing to play along.

"It was so funny," Kupperman said. "I was talking to Juli and I said, 'Here's our plan. Will he do it?' She said, 'Of course he will.' What a great sport."

Kupperman said that this year's event generated more than $100,000 for Make-A-Wish CNY. Over the course of 28 years it has raised nearly $1.6 million, growing from hosting 210 fans to its current size of more than 750.

The proceeds allow Make-A-Wish to provide gifts to area children with critical illnesses. Unlike many people presume, the beneficiaries of Make-A-Wish events are not always cancer patients. The diseases are serious but not always terminal. Recommendations are made with the input of doctors.

First-grader Sophiona Shelley will be doing to Disney World thanks to Make-A-Wish Central New York. (Photo courtesy of Heather Shelley)

Along with the trip, Sophiona received a Disney suitcase and other gifts, including a poster, signed basketball and a headband based on the movie Frozen.

She took pictures with cheerleaders and Otto. Her trip is schedule for Spring 2020. Heather said she is most looking forward to visiting the beach going on rides at the amusement park.

More importantly, events like Sunday's have helped Sophiona accept the experience.

"She's been talking about it non-stop," Heather said. "She wants to be a cheerleader now. She can't stop showing off her suitcase. She wore her headband to school today. She had a hard time at first, having to wear the hats and the rash guards. I'm just grateful that now she is looking at it as a positive now. She's not embarrassed to be different. She's more proud."

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