Fifteen-year-old Brandon Smart has been a fighter from the very beginning.
Born prematurely at just 28 weeks, Brandon weighed less than three pounds and suffered a grade four brain bleed – a collection of blood within the brain tissue. His twin sister passed away from complications shortly after birth.
At five months old, Brandon was declared blind. At ten months old, he was diagnosed with Cerebral Palsy – a neurological disorder that affects the body’s movement and muscle coordination.
Brandon’s medical challenges continued to manifest during childhood, and now through adolescence. For nearly five months last year, Brandon received acute care treatment in his home state of Maine for infected pressure ulcers and broken bones in his legs. He spent two weeks at Boston Children’s Hospital for additional care before transferring to the Pediatric Rehabilitation Program at Franciscan Children’s for rehabilitative therapies, with the ultimate goal of sending him home with his family.
“I can see a light at the end of the tunnel”
“Because of Franciscan Children’s, I can see the light at the end of the tunnel,” says Denise Smart, Brandon’s mother. “Brandon’s care team is teaching him how to resume normal activities with modifications. His spirits have improved so much since we arrived.”
Brandon’s contagious and outgoing personality and smile are well known and loved among staff. “His love of telling jokes has captured the hearts of all staff on the Unit,” says Kristen Hildreth, Child Life Specialist. “Brandon is very sarcastic and competitive…. his optimism and resiliency, despite being in the hospital, have been inspirational to all who are privileged to work with him every day.”
Despite his health care obstacles, Brandon is a typical 15-year-old boy. He is well known and loved as the manager of the boys’ baseball team that his father, Robert, coaches in Maine, and his motivational speeches to his team are nothing short of inspiring – if not tough at times! Brandon also loves games (especially tic-tac-toe and air hockey) and is a diehard Boston Red Sox fan. He wears his Dustin Pedroia jersey as often as possible, and will tell anyone willing to listen all about his lifelong dream to visit historical Fenway Park.
Franciscan Children’s is more than a four-hour drive from the Smart’s home in Howland, but the family does their best to stick together despite the distance. Denise spends most of her time with Brandon so that Robert can continue working. Brandon’s nine-year-old little sister loves her big brother and visits him as often as she can. They are all hopeful for the day when Brandon can go home and they can be a full-time family again.
The Smart family relies on federal Medicaid funding to supplement their private insurance in order to cover Brandon’s medical expenses and nursing care. They have yearly interviews with Mainecare, Maine’s Medicaid program, in order to continue coverage – including Brandon, who has to answer numerous questions about his challenges.
“Without Medicaid, Brandon wouldn’t get the care that he needs, and I’m not sure where we would be,” says Denise who went back to school a few years ago to become a case worker to help other kids like Brandon get the services that they need. “I invite legislators to meet my son. Get to know him, who he is, and see who you’re impacting by cutting funding from this program.”
Brandon is one of more than 30 million kids in the U.S. who rely on Medicaid for access to the health care they need. With the senate aiming to vote on new healthcare legislation before the end of June, now is the time to join the conversation and advocate for Medicaid. Please take a moment to send an email to your senator and share Brandon’s Story, or visit our Advocacy webpage for more information and details.
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