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 firstname.lastname@example.org.