Finding a voice and strength: A community’s mission to create inclusion for all
On the night of Valentine’s Day, the Harrison family looped through the winding roads at their Lake Hogan community in Chapel Hill and saw that their neighbors – both friends and strangers – had pinned a pink ribbon onto their mailboxes in honor of their daughter, Madeline Harrison.
More than 150 families, 181 to be exact, were rooting for Maddie to make it back home.
And that night, Maddie finally did.
“The biggest smiles we get from Maddie are when we are driving home,” Stuart Harrison, Maddie’s father, said. “She loves her family and being with us in our community.”
Maddie has spastic quadriplegic Cerebral Palsy and a seizure disorder. She is non-verbal and unable to sit, stand or walk on her own. While this makes her more susceptible to illnesses, she has always been included in family excursions, from biking and racing to skiing and tubing, her parents, Stuart Harrison and Margarita Escaler, said. She has gone everywhere with them from Singapore to down the street in her neighborhood.
But during a Christmas holiday, the Harrisons were far from their Chapel Hill home. They celebrated Maddie’s 11th birthday in Manila, Philippines, at a beach close to her grandmother’s home.
After spending three days in the sand, her parents noticed that she started sounding unwell and was breathing heavily.
Maddie was rushed to the emergency room of St. Luke’s Medical Center in Makati, Philippines, on New Year’s Eve. Her 60-pound body went into respiratory distress causing pneumonia and sepsis.
Just two days after her birthday, she was intubated and put on a ventilator. Her condition worsened as her body went into acute respiratory distress syndrome. Her family surrounded her with words of positivity as they held her hand and brushed her curly brown hair.
“Each time we saw her, we continued to whisper words of encouragement, hold her hand and tell her to continue fighting,” Escaler said.
Escaler contacted her friends back home, providing updates on Maddie’s health.
“Margarita sent me and Amy (Drumheller) a text message the first night they went to the hospital and said ‘Please pray for us we are heading to the ER,’” Lindsay Bedford said. “It headed into a bigger snowball then we expected, so everyone back here felt helpless and wanted to help.”
But Drumheller and Bedford did more than pray. They organized an initiative among close friends to put massive pink ribbons on their mailboxes, in honor of “Team Maddie,” a group of runners in the neighborhood who race with and for Maddie. They wrote on Nextdoor, a social networking service for neighborhoods, and explained to the Lake Hogan community what transpired.
Initially, the two women didn’t expect many people to take action, but their ribbon orders grew from 15 to 100 in a matter of days. The neighborhood showed support, and so did local elementary schools: Rashkis and Morris Grove.
Friends and neighbors sent photos of themselves with smiles and posters of inspiring words from “Maddie, you’re a star, keep shining bright,” to “I’m rooting for Team Maddie.” While others sent videos that Escaler played into Maddie’s ear, in hopes that she would hear the familiar voices and keep fighting.
“After five or six days of putting it out on Nextdoor, we sent Margarita the video,” Bedford said. “That’s when they understood the magnitude of Team Maddie, it’s not just the seven people that ran with Maddie for the marathon who cares about them, it’s a whole neighborhood.”
Team Maddie began when Maddie’s brother, William Harrison, pushed, carried and biked with her in a children’s triathlon called Just Tryan It. 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 said. “Even though I was envious people were yelling ‘Go Maddie’ while I was running, it felt good to know that I’ve done this with her.”
The name Team Maddie formed and became popular in the community after William’s inspirational feat. Since then, Maddie has completed more than 15 races and eight in 2018, the most the family has ever done in a year.
Team Maddie joined Ainsley’s Angels in 2017, a non-profit organization that ensures everyone with special needs can experience endurance events and be included in all aspects of life.
The Harrisons were asked to run in the Marine Corps Marathon and agreed. But to qualify they had to raise money for Ainsley’s Angels. The family was one of the top fundraisers, bringing in more than $11,000 for the organization.
This was the first marathon Maddie was going to participate in.
While Maddie can’t physically run herself, she is pushed in an adaptive neon pink racing chair, or “chariot” as Ainsley’s Angels call it.
Her father and six neighbors trained to push Maddie in the race. Sometimes the runners would bring Maddie along for the ride and other times they would push the chair with 120 pounds in it to simulate the real experience.
“Several of us had zero desire to run a marathon, but we wanted to do it for Maddie,” said Amy Drumheller, a neighbor and friend of the Harrisons. “I thought about it for 3 seconds and said ‘I can’t not do this.’ It became way more than running a marathon and giving Maddie that experience that was most enticing, despite the marathon we were going to be running.”
A few days the race, Maddie’s Speech and Feeding Therapist, Lynn Carswell, asked Maddie how she was feeling.
By using her eye movement and communication PODD book, Maddie responded, “Very nervous. Scared.”
Carswell teaches Maddie to speak by scanning through words and communicating with her eyes.
“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,” Carswell said. “It’s really important for children who are nonverbal to understand what happens around them and what happens to them and for them to get a say in what they do.”
On October 28, 2018, race day, Maddie and her father woke at 3 a.m. and prepared to get to the 8 a.m. starting line.
All seven people and Maddie were wearing pink apparel from head to toe, including Maddie’s neon pink racing chair. As the group prepared for the race to begin, they lined up next to 42 additional adaptive wheelchairs, also sponsored by Ainsley’s Angels.
Escaler and Maddie’s little sister, Emma, held posters with words of encouragement as they waited at the finish line.
As they ran in a sea of pink, surrounded by other Ainsley’s Angels, Harrison and the six neighbors pushed Maddie with the pressure and determination to succeed not only for themselves but for her, too, Harrison said.
When they hit the finish line, Maddie’s face lit up with a smile.
Cheers for Team Maddie echoed around her at the finish line and although she couldn’t speak, she eyed her PODD book and informed everyone that she was proud and happy.
Proud and happy.
After arriving back in the United States, her family took no breaks and within weeks were taking Maddie to compete in races. Team Maddie has already competed in three races in 2019, including the Tar Heel 10 Miler, and plans to complete more than five for the rest of 2019.
“They didn’t think she was going to make it when she was on a life support machine,” Drumheller said. “But she has turned the corner and fought more than a marathon herself.”
As for the Lake Hogan community?
People continue to wave at Maddie as she wheels down the street.
“We will continue to cheer Maddie on as she continues to be a source of inspiration for not only us but so many others,” Bedford said. “Any neighborhood is capable of it, but it takes work for the family and close friends to put in the effort to make it a truly inclusive neighborhood that makes life that much richer.”
Jacquelyn, a senior from Bedford, NY, is a reporting major with a minor in creative writing. Currently, she writes for Grepbeat, where she reports on business and tech-based news in teh Triangle. Jacquelyn also works for N.C. Business News Wire, where she reports on companies in the state. This past summer, she wrote for Luxury Travel Magazine in Sydney, where she focused on business and travel writing. After graduation, Jacquelyn hopes to enter business and tech journalism.