Mattie Spinner loves to dance, sing, watch Elmo on “Sesame Street” and loves to swing on the swings like any 2-year-old.
She loves to smile, is learning how to talk, and doesn’t mind being teased when her brother messes with her hair.
But she is far from a typical kid.
Mattie, named after former New York Yankee star and current Los Angeles Dodgers manager Don Mattingly, has had a rough run of it in her short two years. She was born nine weeks early with a brain injury. She had a 12 percent chance of survival.
Mattie’s parents, James and Jessica, did a lot of praying. They knew in advance that their child was a high-risk baby and were given options that are not easy to discuss. They decided they were going to have their child and give her a happy life, no matter what the result might be.
When Mattie was born, it was obvious that something wasn’t right. After she turned 8 months old, she was diagnosed with cerebral palsy. James and Jessica are doing what they can to raise awareness of the disease by hosting a Hope for Mattie charity golf tournament at Heritage Harbor Golf Club in Lutz on Oct. 5.
Mattie recently received her new wheelchair — she’ll likely never walk in a normal way — and proceeds from the tournament will go toward therapy and medical expenses.
Her main issue right now is her lungs, which may or may not develop properly. She’s been through a lot in two years, but retains a smile that can melt any heart. She’s happy, and that’s all that matters to James and Jessica.
It was tough from the start. After 23 days on a respirator monitor, the little girl who wasn’t supposed to make it went home. Even then it wasn’t easy — the damage had already been done.
“We knew Mattie got a life sentence,” James said. “We knew the dangers and we were in shock for awhile and we knew things weren’t right. We got the diagnosis after eight months. Something was wrong.”
Cerebral palsy is not a degenerative or hereditary disease. Mattie’s brother, Joba, named after New York Yankees pitcher Joba Chamberlain, has no symptoms. Jessica simply describes Mattie’s condition as a “fluke.”
Mattie can’t walk yet, but that isn’t rare for a 2-year-old.
James said Mattie doesn’t know she is different, but it’s already become a bit difficult dealing with her circumstances. Mattie might not be able to move like most other 2-year-olds, but she gets plenty of exercise, including horse riding with a trained physical therapist.
“She gets frustrated,” James said. “She needs help to do things and she needs to tough it out, so we have a lot of work to do, but it’s all worth it. She’s happy all the time.”
As Mattie sat on the floor playing with her iPad, Joba was trying to hitch a ride on Mattie’s new wheelchair. He’s been with Mattie since the start and doesn’t mind the weekly drive to Gainesville where Mattie gets treatment.
James and Jessica have come to terms with Mattie’s situation. Both still work. Jessica is an accountant and James works as a chemist. They have a nanny to keep an eye on Mattie and have reached a degree of acceptance.
“The whole thing has changed my outlook on life,” James said. “I’ve lived a good life and I realize now that it is out of our hands.”
“She has changed so much in the past two years,” Jessica added. “She can’t run like other kids, she has to use a wheelchair, and she is just so happy. She is so happy.”
With that, Mattie looked up at a stranger to say goodbye. The smile said it all. She is happy and looked like a normal toddler who just wants to sing and dance and watch Elmo.
Mattie will ride in a golf cart and visit the players during the tournament.
For more on Mattingly Spinner, and to register for the Hope For Mattie golf event at Heritage Harbor Golf Club, check www.hopeformattie.com.