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Claire Cooke and Hailey Bitters could only watch as Kent State forward Jenna McCrudden fired a shot into the net, securing the Golden Flashes a comeback victory. Syracuse was stunned after recording 11 more shots and five more penalty corners than Kent State. But the Orange only found the back of the net once, suffering their first loss of the season.

Usually after a loss, Bitters and Cooke’s emotions would exclusively be negative. But the two players felt mixed emotions. The reason? Angelina Facciolo, a 10-year-old girl with spinal muscular atrophy (SMA) was in attendance.

“It was nice to kind of decompress in the locker room and then come out and kind of try to separate the two and welcome her as best we could,” Cooke said.

Facciolo came to the game as Syracuse field hockey’s Team IMPACT representative. Team IMPACT is a nonprofit organization that matches college athletic teams with children who have chronic illnesses. Syracuse has multiple teams involved with IMPACT, including women’s lacrosse. Until this season, the field hockey team had yet to meet Facciolo in person.

The experience was one of the countless experiences Facciolo was told she wouldn’t be able to do. Facciolo’s mother, Erin Facciolo, remembers doctors telling her that Facciolo would be lucky to see her second birthday. On Tuesday, Facciolo celebrated her 10th birthday. And now, Facciolo has a whole college field hockey team behind her back.

Erin describes Facciolo as the family’s “old soul” and “mother hen” because she’s always cautious about what everybody else is doing. Sometimes when Erin, her husband Frank, or her other daughter Rosalie, talk with the 10-year-old, they think they’re talking to a 90-year-old, Erin said. Still, Facciolo has all the hallmarks of a fifth-grader at J.D. George Elementary School.

“I love to draw and play outside,” Facciolo said. “I also love horses, my favorite color is red, and my favorite subject in school is science.”

Facciolo’s world changed when she received her diagnosis of SMA at just nine months old. Erin remembers the day when the world was closing in on her. It is something no parent ever imagines happening to them, Erin said. Looking back on that day, the hardest thing for Erin was hearing all the things Facciolo wasn’t going to be able to do. She hated that instead of encouragement, all she heard were things in the future that wouldn’t happen for her daughter.

“We heard that she’s never going to do this, she’s never going to do that,” Erin said. “And we just had this glimpse and this whole image of being parents, and then it’s all been flushed down the toilet.”

According to the Muscular Dystrophy Association, SMA is a genetic disease that affects the central nervous system, peripheral nervous system and voluntary muscle movement. It results in the loss of nerve cells called motor neurons in the spinal cord. So as Facciolo gets older, her muscles will deteriorate.

Facciolo uses a wheelchair and is “cognitively intact,” Erin said. She also has a feeding tube and wears a ventilator while sleeping. Since she was five, Facciolo has been receiving a spinal injection every four months to slow the progression of the disease.

For the Facciolos, the ignorance of disabilities in the rest of the world takes its toll.

Look who made it to her first game in person today! We were so excited to have our @goteamimpact teammate Angelina and her family at J.S. Coyne Stadium today

When the Americans with Disabilities Act (ADA) was signed in 1990, it said schools and workplaces were required to have ramps, elevators, designated parking spots and provide accommodations for people with a range of disabilities. It was a transformative law that helped protect people with disabilities from discrimination. But Erin still finds the laws come up short, as she finds many older buildings are still not accessible.

The most memorable moment was when the Facciolos went out to a restaurant several years ago and immediately noticed that there wasn’t a ramp for Facciolo to enter the building. They were confused and asked the restaurant staff where it was. But the staff gave them no answers and then offered the Facciolos a takeout option instead.

“It’s hard for people to understand how not accessible our world truly is,” Erin said. “And how our world caters to people with two legs and what that’s like not to people who have wheelchairs.”

But Erin said the most challenging aspect is making their own home and its services accessible. When they first got to their home four years ago, the Facciolos filled out paperwork to have their bathroom modified to make it accessible for their daughter. Today, they’re still on a waitlist to make the proper changes to the bathroom.

The Facciolos have found a way to get her to the bathroom and take a shower, but the frustration still looms. Erin wasn’t able to even provide an accessible vehicle for her daughter early on. For over a year, the Facciolos used a manual ramp to get Facciolo in and out of the car.

Even getting a wheelchair for Facciolo was an arduous process. When Frank and Erin started the process, their primary health insurance provider denied them because “it wasn’t medically necessary for her to be mobile as she was just two years old.” They then turned to New York state Medicaid, but the family was once again denied.

Next, the Facciolos had to go in front of a Medicaid judge to try and overturn the ruling. They even got an attorney to overturn the denial just to get their daughter a power wheelchair.

But the court felt like she didn’t need to have the power wheelchair, denying the Facciolos again. Through the 16-month long process, Facciolo became old enough to go to preschool, so the family decided to take their story to NewsChannel 9 in Syracuse.

The day after going on NewsChannel 9, the Facciolos obtained a wheelchair just in time for their daughter to start school.

Courtesy of Eric Facciolo

With the help of her parents and outside resources, Facciolo has done things that her family never thought she could do. She has found adaptive programs that helped her rock climb and ride a bike and a horse. She also was able to go on a hike with her family last summer, and her mom even carried her up a waterfall.

“She’s done all these things that we were just told that she would never do,” Erin said. “It’s not about what she can and can’t do. It’s about how it affects the way around it to help her successfully do it.”

Team IMPACT was another venture the Facciolos wanted to try. Erin found out about the organization last fall after a friend with a child with a disability posted about their experience on Instagram.

The Facciolos filled out the forms with Team IMPACT, and Facciolo was asked about her favorite sports, one of them being field hockey. And since the family was 35 miles from SU, they were paired with the Orange’s field hockey team.

Facciolo first interacted with the team on Zoom in November 2020. Because of the pandemic, they met on Zoom almost every week last year.

The team gave Facciolo a Syracuse hat as a gift, promising that whenever she wore it, they were sending her strength. When asked about it, Facciolo had a big smile on her face, saying “it felt really good.”

Every meeting featured a different group of field hockey players who would speak with Facciolo. During the meetings, the group would play many online games, like trivia. Whether the trivia was about TV shows or actors, Facciolo loved every second. Cooke especially remembered when they played a trivia game about Disney’s “Descendants” franchise and Facciolo got every question right. Syracuse’s players would just let Facciolo surf the web or talk about her day. Erin said her daughter was on “cloud nine” during the Zoom meetings.

Head coach Ange Bradley said by hanging out with Facciolo nearly every week, the team grew as leaders.

“They have been great leaders on the field, but they also are showing how they are great leaders off the field,” Bradley said. “That’s what we want to do here. We want to create strong leaders.”

Through those Zoom meetings, the anticipation for finally meeting in person kept growing. When the tailgate happened after the Kent State loss, Bitters remembers Facciolo acting differently than she had in the video conferences. She was nervous and shy, Bitters said.

“But then once we talked for like 10 minutes, she came out of her shell again,” Bitters said.

Erin loved that she and her daughter could finally put some names to faces they had only seen virtually. But she remembered the gifts that Facciolo got the most, including a piccolo that one player brought from Ireland.

“Now Angelina is going to play the piccolo in the school band,” Erin said.

CLARIFICATION: In a previous version of this post, language used to describe Facciolo’s abilities, such as “confined to a wheelchair,” was not in accordance with our style and can be insensitive to people with disabilities. The Daily Orange regrets this.

Published on September 26, 2021 at 11:45 pm

Contact Henry: henrywobrien1123@gmail.com