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news News Tuesday, February 19, 2019 Tuesday, February 19, 2019 5:12 PM - Tuesday, February 19, 2019 5:12 PM

Physician and therapists help boy with cerebral palsy gain greater independence

Bentley can feed himself and sit with support

Physician and therapists help boy with cerebral palsy gain greater independence

By Mary Schille

As babies grow, they typically master certain skills such as rolling over, sitting, feeding themselves and walking. When Bentley, who was born at 29 1/2 weeks, failed to meet those milestones, his parents took their concerns to the pediatrician. “Don’t worry,” the doctor said. “He’ll catch up.” That never happened.

“Bentley could barely pick up a piece of cereal or hold a cup,” his mother, Linda, recalled. “He couldn’t hold himself up in a sitting position at all.”

His parents took him to Shriners Hospitals for Children — Tampa for answers.

In addition to having cerebral palsy, Bentley has periventricular leukomalacia, characterized by the death of the white matter of the brain due to the softening of brain tissue, according to the National Institutes of Health. Premature babies are at the greatest risk of the disorder. White matter is tissue in the brain composed of nerve fibers that connect nerve cells. He also has neuromuscular scoliosis, a curved spine caused by disorders of the brain, spinal cord and muscular system.

Thanks to Bentley’s determination, his family’s support and the care he receives from the staff at the Tampa Shriners Hospital, Bentley can now feed himself almost anything by hand. He can also side sit on the floor while using his hands for support, and can kick one leg at a time. He has even learned to give the thumbs up, a gesture this positive boy enjoys making to encourage others.

“To most people, these milestones probably don’t seem like a lot, but for us, it’s everything,” said Linda.

Bentley receives therapy twice a week and sees pediatric orthopaedic surgeon Joseph Khoury, M.D., every four to six months. Bentley has very little head, core or trunk control. Physical and occupational therapy sessions strengthen him, decrease his discomfort and increase his range of motion. Bentley also visits Pediatric Orthotic and Prosthetic Services – Southeast, LLC, at the Tampa Shriners Hospital for new leg braces every year, and gets his wheelchair adjusted in the hospital’s seating department. Bentley has had two surgeries at the Tampa Shriners Hospital.

The care Bentley receives at the Tampa Shriners Hospital has enabled him to become more independent and socially active. “Bentley loves each and every person at the Tampa Shriners Hospital, from the doctors and nurses to the therapists and techs. He makes sure to greet each person he sees and asks them how their day is going,” Bentley’s mother said.

As a patient ambassador, Bentley enjoys telling others about our hospital’s mission to care for children with orthopaedic conditions. Bentley loves sports, so he and his family have been to all the East-West Shrine Games since he became a patient. Bentley loves getting to meet all the players at the hospital visit. This year, Bentley also attended the Tampa Shriners Hospitals Walk for LOVE™ event in Daytona Beach. Bentley loved being able to ride his wheelchair on the Daytona International Speedway alongside the other patient ambassadors. Bentley also enjoys going to Buccaneers and Tampa Bay Lightning games.

Bentley first met Tampa Bay Lightning player Ryan McDonagh in April when McDonagh invited Shriners kids to the last game of the season. “A group of us stayed after the game and got to go back to the locker room and meet Ryan,” Bentley’s mother recalled. In October, the Lightning honored Bentley at the game. When Ryan found out that Bentley was in the stands, he invited him and his family to the locker room afterward. Ryan and Bentley have remained in touch. They follow each other on Instagram and talk about hockey, their favorite foods and fantasy football teams.

Bentley and his family hope his story will inspire current and former Shriners kids. Bentley’s mother said, “Never give up. Everything will be okay, and always stay smiling and happy.”

Bentley in therapy
Photo credit: Matt Bilancia