By Jacquelyn Melinek | Photography By Alice Hudson
Published in partnership with UNC’s School of Media and Journalism’s Media Hub
On Valentine’s Day, Stuart Harrison and Margarita Escaler looped through the winding roads of their Lake Hogan community and saw that their neighbors – both friends and strangers – had pinned pink ribbons on their mailboxes in honor of the couple’s daughter, Maddie.
More than 180 families were rooting for Maddie to make it back home. And that night, she finally did.
“The biggest smiles we get from Maddie are when we are driving home,” Stuart says. “She loves her family and being with us in
Maddie, 11, has spastic quadriplegic cerebral palsy and a seizure disorder. She is non-verbal and unable to sit, stand or walk on her own. This has not kept her from joining her parents, big brother and little sister on excursions like biking, skiing and tubing, Stuart and Margarita say, but it does make her more susceptible to illness.
Over the Christmas holiday, the family was far from their Chapel Hill home. They celebrated Maddie’s birthday in Manila, Philippines, where Margarita was born, at a beach close to her grandmother’s home.
After spending three days playing in the sand, Maddie began to sound congested, and she developed a fever. She started wheezing and breathing heavily, her parents say. And she was less responsive than normal.
They took Maddie to an emergency room in Makati, Philippines, on New Year’s Eve. Her 60-pound body went into respiratory distress, and she developed pneumonia and sepsis.
Two days after her birthday, she was put on a ventilator. Her condition worsened, and she developed acute respiratory distress syndrome.
“Each time we saw her, we continued to whisper words of encouragement, hold her hand and tell her to continue fighting,” Margarita says.
Margarita contacted her friends back home, providing updates on Maddie’s health.
Lindsay Bedford and Amy Drumheller, friends and neighbors of the family, say they felt an immediate need to help.
“Margarita sent me and Amy a text message the first night they went to the hospital and said, ‘Please pray for us; we are heading to the ER,’” Lindsay says. “Everyone back here felt helpless and wanted to help.”
Lindsay and Amy asked close friends to put large pink ribbons on their mailboxes.
“Team Maddie” – a group of Lake Hogan community members who have rallied around Maddie before – went back to work.
The team, along with Maddie’s family, has helped to push her in an adaptive racing wheelchair through various races and events. The neighbors have grown close, and this was another moment to rally around her.
Some neighbors sent photos of themselves to Maddie through her parents, smiling with posters of inspiring words. “Maddie, you’re a star, keep shining bright,” one read. “I’m rooting for Team Maddie,” read another. Others sent videos that Margarita played into Maddie’s ear, in hopes that she would hear the familiar voices and keep fighting.
“That’s when they understood the magnitude of Team Maddie,” Lindsay says. “It’s not just the seven people that ran with Maddie for the marathon who care about them, it’s a whole neighborhood.”
The First Race
Team Maddie began two years ago when Maddie’s brother, William, pushed, swam and biked with her in a children’s triathlon called JUST TRYAN IT. He pulled her on a raft as he swam, towed her behind him as he biked and pushed her as he ran. At the time, William was 11 and Maddie was 9.
“It feels good knowing that she’s finally able to run with us and have that experience,” William says. “It felt good to know that I’ve done this with her.”
After the race, Team Maddie became popular in the community. Maddie has now completed 15 races, six in 2018 alone.
Team Maddie joined with Ainsley’s Angels, a nonprofit that helps people with special needs participate in endurance events and other aspects of life.
The group asked the family to run in the Marine Corps Marathon in Washington, D.C., and they agreed. To qualify, they raised money for Ainsley’s Angels. The family was one of the top fundraisers, bringing in more than $11,000 for the organization.
It was Maddie’s first marathon.
Her father and six neighbors, Amy and Lindsay among them, trained to help push Maddie for the full 26.2 miles.
“Several of us had zero desire to run a marathon, but we wanted to do it for Maddie,” Amy says. “I thought about it for three seconds and said, ‘I can’t not do this.’ It became way more than running a marathon; [it was about] giving Maddie that experience that was most enticing.”
A few days before the race, Lynn Carswell, Maddie’s speech and feeding therapist who teaches Maddie how to communicate by pointing to words and images with her eyes, asked Maddie how she was feeling.
Maddie responded using a visual communication tablet called a Pragmatic Organization Dynamic Display (PODD).
“Very nervous. Scared,” she said.
“It was a really powerful time when she expressed her concerns, and we were able to have some open conversations about her concerns and answer them,” Lynn says.
On Oct. 28, 2018, race day, Team Maddie wore pink apparel from head to toe and pushed her in an adaptive, neon pink racing chair, or “chariot” as Ainsley’s Angels put it.
When the team crossed the finish line together, Maddie’s face lit up with a smile.
As cheers echoed around her, she eyed her PODD book and told everyone how she felt.
“Proud and happy,” she said.
Back at It
After arriving home from the Philippines in February, her family decided they would not take any breaks. Within weeks they were taking Maddie to compete in races.
“They didn’t think she was going to make it when she was on a life support machine,” Amy says. “But she has turned the corner and fought more than a marathon herself.”
As for the Lake Hogan community? They still wave at Maddie when she is wheeled down the street.
“We will continue to cheer Maddie on as she continues to be a source of inspiration for us and so many others,” Lindsay says. “Any neighborhood is capable of this, but it takes work for a family and close friends to put in the effort to make it a truly inclusive neighborhood, which ultimately makes life that much richer.”
Read the original article from the July/August 2019 issue:
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