BY ROGER MOONEY
SEMINOLE, Florida – Dylan Quessenberry was 15 when he walked up a flight of stairs for the first time.
It was 20 steps, linking two floors at his school. But for Dylan, who has cerebral palsy, that staircase was more than just a route to the cafeteria at Learning Independence For Tomorrow (LiFT) Academy, a private K-12 school that serves neurodiverse students.
Those 20 steps were part of his journey to what he called “independence,” something he sought when he joined the school in the fifth grade on a Family Empowerment Scholarship for Students with Unique Abilities (formerly the Gardiner Scholarship).
“It was a defining moment in his life,” LiFT Principal Holly Andrade said. “A massive milestone.”
Dylan, now 18 and a senior at LiFT, recently recalled that day as if he were still standing at the summit, sweaty and spent and filled with a sense of accomplishment that few can understand.
Like a marathoner on race day, Dylan woke that morning knowing the years of work he put in with his physical therapist, Valerie, were about to pay off.
“Those stairs,” he thought, “are mine!”
And they were, one arduous step at a time.
Leaving his walker at the bottom and cheered on by students who were involved in afterschool programs, the school staff still on campus and Valerie, Dylan made the ascent. He pumped his fists in the air when he finished.
It took nearly half an hour.
“It was amazing,” he said. “I was like, glorified.”
Andrade arrived on the scene in time to see Dylan reach the second-floor landing.
“I cried like a baby,” she said. “Oh my gosh! I’ll never forget his face.”
It’s hard to imagine a bigger smile.
LiFT is not far from Dylan’s home in Seminole, where he lives with his mother, Marlena, and his twin brother, Ryan. The school includes LiFT University Transition Program, a four-year, post-high school program that Dylan will attend after he graduates this spring.
The program is for neurodiverse young adults who won’t follow the typical path for secondary education. It teaches employability skills, independent living skills and social skills. Community partners offer internships, which often lead to fulltime jobs.
“This school has been amazing for him,” Marlena said. “I don’t know where we would be if we didn’t have LiFT Academy.
“He’s so fortunate to have this school. I’m so fortunate to have this school, because I can send him here and not have to worry about a thing.”
The Family Empowerment Scholarship for Students with Unique Abilities, managed by Step Up For Students, is an education savings account (ESA). ESAs allow parents to spend their children’s education dollars on a variety of educational purposes. Marlena uses it to cover Dylan’s tuition.
“If he didn’t have Step Up, he wouldn’t have accomplished what he has today,” Marlena said.
When Dylan arrived in the fifth grade, he couldn’t button his shirt or zip his jacket. He couldn’t open a bag of snacks or put a straw in his drink. He couldn’t open a door. Or walk up a flight of stairs.
In seven years, he changed those can’ts into cans.
“I gained a lot of independence,” Dylan said.
A lot of those gains were accomplished because of hours spent in physical and occupational therapy. Some were the product of surgeries.
“We’ve been through some surgeries,” Marlena said.
How many? Dylan and his mom both answer the question with a groan.
“About seven,” he said.
Dylan was born with scoliosis, reactive airway disease, a Grade IV brain bleed, Hydrocephalus and a congenital heart defect. He’s had surgeries to lengthen his hamstrings, heel cords and hip adductors.
On three occasions, Dylan spent six weeks in a cast that began at his chest and ran to the bottom of both feet.
What is remarkable about Dylan, Andrade said, is that in the seven years she has known him, she has never heard him complain about his surgeries or the obstacles placed in his life.
“Not once,” she said. “It’s that kind of positive attitude that has gotten him to where he is.”
Could you blame Dylan if he did? Especially when his twin brother does not have cerebral palsy.
“It was hard, at first,” Dylan admitted, “but I overcame the hardships of life and moved on. It’s still in the back of my mind.”
Dylan’s legs are not strong enough to support him on their own, so he uses a walker. He is working toward walking with canes.
The walker doesn’t slow him down. With it, Dylan is one of the fastest students in LiFT’s running club. Assistant Principal Darrin Karuzas never fails to offer this warning when he sees Dylan zip down a hallway:
“Slow down or you’ll get a ticket!”
Marlena has taught Dylan to embrace being neurodiverse. She was adopted by her parents and vividly recalled the day in the first grade when she mentioned that in class. Her teacher scolded her for talking about it.
“I was proud of being adopted,” Marlena said. “My parents taught me to be proud of it, and that’s what I tell Dylan, ‘Be proud of who you are.’ We don’t refer to it as a disability.”
Marlena has always been up front with her son about his physical limitations. There are some things Dylan can do and some he can’t, and Marlena has helped him deal with both sides. It’s that honesty that has allowed Dylan to overcome so much.
“One hundred percent,” he said.
Dylan endured the surgeries because he knew each would help bring him closer to the independence he craved.
“I hated it,” he said, “but I had to do it. It helped me walk. It helped me get up in the car and everything I needed to do.”
Dylan wants to get his driver’s license. He wants to get married someday and start a family.
“That’s my ultimate dream,” he said.
He’s hoping to land a job at a local Winn-Dixie, beginning first as a bagger then, hopefully, as a stock clerk.
“I can easily stock shelves,” he said.
A lover of all things cars and trucks, Dylan would ultimately like to work in an auto shop, fixing cars. Maybe own a garage.
He also wants a Chevy Silverado.
“There is a lot he wants to do in life,” Marlena said. “That’s one thing about him, he is driven.”
Roger Mooney, manager, communications, can be reached at firstname.lastname@example.org.
By Scott Kent
Outside the second-story window of Addison Sinclair’s pink bedroom in Windermere, Florida, across an asphalt bike path, amidst a copse of oak trees draped in Spanish moss, is a green space that will become a memorial to the little girl who is no longer there to view it.
“Addi,” as she was called by her family and friends, passed away Dec. 29, 2020, after a five-year battle with cancer. She was 8.
“Resilient” is how Kara Sinclair described her daughter, who was diagnosed with Stage IV Rhabdomyosarcoma, a rare cancer, when she was 3 years old in 2015. Addi initially endured a year-and-a-half of treatments that included chemotherapy, radiation, and multiple surgeries. Over the next five years, Addi’s cancer recurred nine times.
“She faced things that would knock any adult down. She didn’t let it knock her down,” Kara said. “She always had spunk and charisma. Always looked forward to the next day.”
Kara and her husband, Mark, tried to keep their daughter’s childhood as normal as possible during those difficult times. That included ensuring Addi received an education. She initially tried attending a public school, but she missed so much classroom time because of her treatments that she was forced to stay home. Her kindergarten teacher would come to the house to work with her, but it proved not to be a long-term solution. Addi’s compromised immune system also eventually negated the possibility of class instruction.
Then in 2019 a hospital social worker told Kara about the Gardiner Scholarship for students with special needs (now called the Family Empowerment Scholarship for Students with Unique Abilities), administered by Step Up For Students. The program provides families with up to $10,000 annually in an education savings account, which gives them the flexibility to spend the funds in a variety of ways to customize their children’s education – on private school tuition, materials, therapies, etc.
The Sinclairs used theirs to hire an at-home tutor for Addi, and to purchase an online curriculum as well as a laptop computer, books, and educational games. That allowed them to work around her treatment schedules. Addi blossomed as a student.
“She loved her tutor,” Kara said. “She was a hard worker, and once she had consistency in her schoolwork she picked up reading. She always looked forward to her tutor coming in, she enjoyed having someone there to provide hands-on instruction.”
Without the scholarship, Kara said, the tutor and curriculum would’ve been an additional out-of-pocket expense competing with “insane” medical bills.
“We would’ve had to prioritize med over ed,” she said.
It also would’ve hamstrung the family’s ability to provide Addi many of the activities children her age – and beyond – enjoy. Indeed, they packed decades of experiences into Addi’s short lifetime. The family went on several cruises and beach vacations (Addi loved the sand). Addi had more than 10 Disney staycations, visited several theme parks, and traveled to California, New York, South Carolina, Georgia, and Ohio.
She became a Daisy Girl Scout, and was thrilled to earn badges and win the top Cookie Sales award. Addi also had an artistic side. She made jewelry. She put on puppet shows. She loved all musicals. She enjoyed singing, and she took a dance class. She learned to swim, and her parents built a swimming pool in the back yard, where she spent hours with her friends and “became a little fish.”
Kara said her daughter “never took a nap” and “rarely sat down,” bouncing through the house with the energy of a typical 8-year-old.
The last two months of her life, Addi finally began to slow down. But even when she wasn’t feeling well in her final days, her mother said, she was polite and always used her manners.
Addi passed away at home four days after Christmas, surrounded by her parents, her older brother William, her puppies, and her beloved doll baby.
Addi provided many lasting memories in her short time on earth, but her parents wanted something more. Something physical that others could experience, connecting it to the little girl who brought so much joy to those who knew her. A place where you can hear children’s laughter and families can go as a distraction from what life throws at us. As the Sinclairs said, childhood is short, and none of us know what tomorrow will bring.
That’s when they got the idea to turn that green space outside Addi’s bedroom window into a memorial park for other children and families to play in.
“It seemed like a perfect fit,” Kara said. “She would meet up with neighborhood friends there, and she always said it should have picnic table and swing. It makes sense. She was a kid. She played.”
Addi’s Memorial Park is planned to have that picnic table and swing, as well as benches and playground equipment, such as slides, climbing areas, and a crawl tunnel. The neighborhood homeowner’s association approved the proposal and has agreed to maintain the park.
The Sinclairs are seeking assistance in funding the project. They plan to hold fundraisers (COVID-19 permitting), and they have an online page that accepts donations.
When completed next year – hopefully, Kara said, by Addi’s birthdate of April 4 – they expect the memorial park that bears her name to reflect the qualities that defined their daughter: playful, caring, positive, always with a smile on her face.
Scott Kent, assistant director, strategic communications, can be reached at email@example.com.