'They Found A Way': Oak Forest Girl Gifted Taylor Swift Tickets

OAK FOREST, IL — Lily Brown's blue eyes can say so much. The 14-year-old Oak Forest girl's face tells the stories that her voice can't.

But if she could, she'd shout to everyone that she's going to see Taylor Swift.

Lily, who suffers from a rare genetic condition called Rett syndrome, misses out on a lot, but the Central Middle School eighth grader will have a great view of Swift's show at Soldier Field in June, after getting a little help from a local nonprofit organization.

Lily was surprised last week with the news that Oak Forest-based Project Fire Buddies is sending her—and her parents and sister— to see Swift on her first night in Chicago.

It was a feat Lily's mother, Jen Brown, said she'd feared was impossible, with tickets incredibly hard to secure and prices on those available soaring.

"I had really just about given up hope that we could take her," Brown said. "... They really made the impossible happen."

'Rett syndrome has taken a lot from her'

The concert will be a much-needed respite from what can often be an unrelentingly heartbreaking experience with Lily's condition.

The soon-to-be Oak Forest High School Bengal was born healthy, Brown said, but within months, her abilities began to slip away. She was diagnosed with Rett syndrome, which doctors say is caused by a sporadic gene mutation. The neurological disorder affects 1 in 10,000 girls—it's even more rare in boys—and begins to display itself in missed milestones or regression at 6 to 18 months of age. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily.

For Lily, her regression hit hard at 18 months, Brown said.

"She had a hard and fast regression at 18 months," she said. "We thought we were going to lose her, it was awful.

"It’s a really hard disease; it will impact her for the rest of her life."

Lily is now nonverbal. She doesn’t walk, and she has no functional hand use. She uses a wheelchair and requires consistent care.

But Lily loves people, and her engagement shines through in her eyes and facial expressions, Brown said.

"She’s still a very happy girl, she’s very social even without saying a word," she said. "Her face, her eyes light up. She can say so much with just her eyes and her smile."

Her condition has caused limitations for the teen, who will join her older sister Grace at Oak Forest High School in the fall. So many things typical for a teen girl are just out of reach for her.

"Rhett syndrome has taken a lot from her," Brown said. "She can’t play games, she can’t play on her phone. She prefers more experiences."

'They've always taken care of her'

Several years ago, Lily needed a new pair of wheels—an adaptive bicycle that would allow her to experience the same thrill as many other kids. But it would need to be special: one that her parents could push her on, and the pedals would move on their own. They reached out to Project Fire Buddies, hoping for some help.

Started in 2016, the Oak Forest-based, volunteer-led effort by local fire departments to show support for children battling critical illness interacts with families to bring positivity and support. They stepped in to help secure Lily the bike she needed, laying the foundation of an ongoing relationship between Lily and the organization.

Oak Forest firefighter Meagan Washington, specifically, has bonded with Lily.

"She's a sweetheart," Washington told Patch. "You can always tell she’s super-excited to see me, and engage."

Earlier this year, on Lily's birthday, Brown made a promise she would ultimately find was difficult to keep: she would take Lily to see Taylor Swift. Months later, she was feeling defeated after an exhaustive search for tickets that would accommodate wheelchair seating.

"Getting tickets was so much harder than we imagined because of the wheelchair," Brown said.

Lily's limitations make experiences—rather than things or possessions—more important. Brown had taken Lily's older sister to a Taylor Swift concert previously, and so badly wanted to be able to share that same experience with Lily.

With hope dwindling, she turned to Project Fire Buddies. Project Fire Buddies CEO Kurt DeGroot said he had no idea just how big of a task it would be to grant this one, very specific wish.

"We exhausted every one of our contacts to do this," he told Patch. "I never realized how difficult it was to get them."

DeGroot, along with local businessman Kevin Schuster of Midtown Wine Bar in Manhattan, called in a lot of favors, and found a way. The family will have floor seats, in an ADA-compliant section. All four will be able to attend together—their first concert as a family.

"We look at every child, every fire buddy, like they’re our own family," DeGroot said. "All of us on the team, try to put ourselves in their shoes.

"This was something that they really wanted, and they thought they’d be able to pull off, and unfortunately it was impossible for them. For us to be able to do this for them, it’s huge. In its roots, that’s what it’s all about. To create these memories for these families.

"We won’t cure cancer, but we’re going to create memories for these families, and give them an escape."

The group being able to secure tickets was astonishing, but their willingness to do anything for a smile from Lily, not so much.

"Any time we’ve ever reached out, they’ve found a way to take care of her, give her what she needs," Brown said. "Once again, they just blew us away. They’ve always taken care of her. They’re amazing. This one really knocked it out of the park."

"... It lights her up"

If she's not in one of her Project Fire Buddies T-shirts, Lily's wearing an Oak Forest High School Bengals one. She's so excited to be a Bengal, Brown said, and the concert will come just after Lily graduates from eighth grade—a graduation present of sorts for all of them.

"There’s a lot of things we can’t do because of Lily, and Grace misses out," Brown said of a difficult truth in their family. "It’s hard to be a special needs sibling."

As witness to the beginnings of Project Fire Buddies, Brown said it's been thrilling to watch the organization grow and thrive, with increased awareness and support. The group has expanded now to 30 different departments including south suburban Oak Lawn, Palos, Orland Park, Tinley Park, Midlothian, Homewood, Lockport, Lemont, New Lenox, Evergreen Park, Frankfort, Manhattan and Country Club Hills.

Brown and her husband Jon are lifelong Oak Forest residents, alumni of Oak Forest High School and supporters of the town and organization.

"We’ve been here forever, Oak Forest was the first chapter," Brown said. "Lily was one of the first fire buddies. As they’ve grown, we’re so proud they’ve kept up with Lily. To see it from the very seed as it started, it’s incredible."

The continued relationship with the fire buddies and Washington, specifically, has brightened many of Lily's days, Brown said.

"... they’ve become friends to us," she said. "For people who are profoundly disabled, they don’t have a lot of friends naturally, for them to have firefighters and people in the neighborhood as friends, it means a lot to them."

Brown's husband Jon isn't exactly what one would call a "Swiftie," but " he appreciates good music," she said.

"He’ll be in charge of us that day, he’ll get us down there," she said. "When we take Lily places, it’s helpful to have two adults. It’s easier with the two of us. It’ll be a family affair."

Washington said she's thrilled Lily will get to see the show, and knows it might have been hard for Brown to ask for help in making that happen. She loves seeing Lily's happiness written all over her face.

"People don’t like to reach out for help," Washington said. "It’s nice to be there, support them. ... It was probably hard for her mom to ask for the tickets, but that’s what we’re here for."

With Lily's world being so limited by her condition, the show will give her a night to feel as though she can "Shake It Off"—her favorite Swift song, by the way.

"She can’t talk to peers, play with peers, it can be lonesome for her sometimes," Brown said. "When she has something like this to look forward to, it lights her up.

"I’m really excited for her, it’ll just make her so happy."