Ask most people what makes being a member of the Loyola Academy community a great one and the majority will have a similar answer: family.

Whether it be with returning alumni, family, friends or the athletes following the school’s motto of being “Men and Women for Others,” there’s something that stands out about the school.

That was none more evident this spring when the Loyola girls lacrosse team embraced the presence of Ryan O’Connor, 3-year-old son of Loyola alumna, and a lacrosse All-American, Elizabeth O’Connor and her husband Ben.

Ryan suffers from Angelman Syndrome, a rare genetic disorder that affects the nervous system.

The syndrome affects the fine motor skills and children with Angelman Syndrome typically have problems with movement and balance, verbal communication skills and delayed development, according to the U.S. National Library of Medicine.

The Ramblers girls lacrosse team welcomed Ryan and the O’Connor’s to multiple games this season and denoted themselves as “Team Ryan,” Loyola coach John Dwyer said.
“We can’t have him around our team enough. He’s such an uplifting kid.

“I think probably no individual has done more for us over the years than Elizabeth. And while at first, you’re heartbroken for them, it’s hard to be heartbroken around them when you’re with them because they’re so positive about it. And they will give this kid the best life that he could ever have.”

Typically, the girls lacrosse team decides to fundraise for a different charity every season and this year, after a suggestion from Lynn Gorman, of Loyola’s Admissions Office, the team chose the Foundation for Angelman Syndrome Therapeutics (FAST). The donation would be made in Ryan’s name, the O’Connor’s was flattered and touched.

After meeting with the team and members of the Loyola girls lacrosse board, the group decided to have a bake sale at the school, selling baked goods for a dollar. The team raised $1,050 from the bake sale alone, the team donated $7,000 to FAST in total after matched donations and other fundraising efforts.

Ryan’s Story
At just 18 months old Ryan was diagnosed with the rare genetic disorder, years ahead of the typical 3-7 year-old age range.

Since the team had spent so much time around Ryan, they were curious. The O’Connor’s, Highland Park residents, sat down with the girls during a team dinner this season to explain Ryan’s disorder in full.

“Most people are very interested and curious, and it’s eye opening for them to learn about Angelman Syndrome and I think that’s been what’s been most amazing about the lacrosse team,” Elizabeth O’Connor said. “When we presented to them at their team dinner, they all were so compassionate and interested, genuinely interested in what Angelman Syndrome is and how it affects Ryan.”

That meant a lot to Elizabeth O’Connor and her husband.

For the first-time parents, being told that there was something different about their first-born child, that he won’t be like the rest of his peers, was difficult information to process.

“It was devastating,” Elizabeth O’Connor said. “The neurologist said, ‘He’ll never walk. He’ll never talk, and he’ll never live an independent life.’ To hear that your first child, as a first-time parent, was devastating. I mean just complete shock. Slowly but surely you see him progress, you see him do the things they say he’d never do. And you see that the only limitations he has are the ones that people place on him.”

To help cope with the disorder, Ryan attends therapy Monday-Friday, and does a combination of physical, speech and different forms of occupational therapy. One of which is hippotherapy, where he works with an occupational therapist on a horse. In total, Ryan has six-to-eight therapy sessions a week and now has started school which provides extra help as well.

Ryan is non-verbal, but technological advancements have made it easier for him to communicate with his parents and others. Ryan uses a voice app called Touchchat on the iPad which helps him ask for what he wants.

“It’s four blocks on the screen,” Ben said. “So it’s on the screen and it’ll say something, ‘I want … I feel …’ something about, ‘Me …’ And you can choose, ‘I want X kind of food.’ Then a new screen comes up with four options. If not that, he pushes the next option.”

“Our speech therapist in particular says, ‘He’s smart. He understands what you’re saying. He’s getting it,’” Elizabeth O’Connor said. “He must be so frustrated because he wants to do something in his brain but he can’t tell his body to do it, or it doesn’t listen properly.”

Support means everything
The couple realizes how lucky they’ve been to have the support of not only their family and friends, but the Loyola community.

“We realize how lucky we are, as difficult as this has been, we’re surrounded by great family and friends,” Elizabeth O’Connor said. “We have the resources and the education to navigate this difficult journey.”

“We don’t really know how much of a toll this takes, emotionally, because [Ryan] is fun to be around,” Ben said. “But it still does take a lot out of you and just hearing from people, and people saying, ‘I’m really thinking about you guys.’

“I think anybody who’s got a child with special needs loves hearing that kind of stuff.”

The support the family has received from the Loyola community, the girls lacrosse team and even coach Dwyer has made dealing with everything that much easier.

“I know that they will certainly face challenges, but there is nobody that is better equipped or better willing to take it on for their child,” Dwyer said.

Elizabeth O’Connor is amazed by her son on a daily basis, and provides the family with a good reminder of what they have to be thankful for.

“He continues to amaze us with his hard work and his determination,” she said. “He inspires us every day with just the way he approaches life with a big smile on his face.”

Story originally appeared in 22nd Century Media newspapers in 2018.