Family and friends say one word best describes Brandon O’Harver: courageous.
“He took everything life threw at him and kept smiling,” said his father, Matt, 52.
“He never complained,” added mom Chrissy, 53.
Brandon died April 8 at age 26 after a lifelong battle with Duchenne muscular dystrophy.
His parents say Brandon was a happy baby, even when it became apparent early on that he had delays in crawling and walking.
“He rolled everywhere,” Matt said. “He went to physical therapy for 18 months, and his pediatrician kept telling us he would probably catch up.”
The family was finally referred to specialists when Brandon was 4.
“They watched him play, watched him go up stairs,” Matt said. “There’s something called the Gowers movement, where they observe how a kid gets up off the floor based on the weakness of specific muscles, that is a marker for Duchenne MD patients, and he had it.”
A muscle biopsy and some other tests resulted in an MD diagnosis.
“They did a genetic test to determine what type, whether rapid or slow-moving, and they tested us and found neither of us carries the (MD) gene,” Matt said. “His is what they call a ‘sporadic mutation,’ meaning it just shows up out of nowhere.”
Brandon started school, and life went on pretty normally for the O’Harvers for the next few years.
“We knew his life might be a short one, so we tried to pack everything we could into the time we had,” Matt said.
Friends organized a GoFundMe drive to send the family to Walt Disney World shortly after Brandon’s diagnosis, and they went a few more times over the years.
“He loved Disney,” Chrissy said. “We took him on a couple of Disney cruises.”
The family also was gifted a trip to Give Kids the World in Orlando through the Make-A-Wish Foundation.
Once Brandon became confined to a wheelchair at 9, school became more complicated for him.
“Vineland (Elementary School) wasn’t very accessible at that time, with things on different levels,” Matt said. “My wife would go to school at a specific time and carry him up the stairs so he could go to art with his class.”
At the end of fifth grade, the family decided homeschooling was a better fit for Brandon.
“Kids at school are always sick, and with the progression of his disease, a simple cold could’ve been very bad for him,” Matt said.
Luckily, the social aspect of school mostly continued for young Brandon because of his extended family’s support.
“The friends he had at school were mostly cousins, and they were more like siblings,” Matt said. “Tuesdays and Thursdays they’d all go to Grandma’s house and have ‘play nights.’ So he had a lot of interaction with kids, just not in a school setting.”
From babyhood, Brandon was fascinated with police officers and firefighters, who traditionally have been involved in fundraising for the Muscular Dystrophy Association.
“I had friends who were firefighters, and they’d invite us over for training nights and he’d get to watch,” Matt said.
When Brandon turned 16, the crew made a large wooden sign saying ‘Firefighter Brandon’ complete with working lights, and he was made an honorary De Soto Rural Fire Protection District firefighter.
“That sign hangs in our living room,” Matt said.
As he grew older, Brandon’s disease slowly robbed him of most body functions.
“He lost the use of his arms and eventually his hands,” his father said.
But that didn’t stop the bright-eyed boy from engaging in his favorite activities.
“He loved to play video games, build with Legos,” his dad said. “He convinced me to do some leather work – tooling and stitching – and we’d try to recreate what he saw on YouTube videos.
“He couldn’t do it himself, but he would watch and instruct me. He got joy out of experiencing it, and it was a way for him to stay creative and connected.”
In recent years, Brandon began to have difficulty eating, and in 2020 he started having breathing issues.
“He was put on a machine similar to a CPAP,” Matt said. “Originally it was just for overnight, but as the disease progressed, he used it more and more.”
Brandon caught COVID-19 in March.
“We all had it before, and he breezed through then,” Matt said. “This time, he got a really bad sore throat, had trouble swallowing, eating, drinking. We put him in the hospital to get fluids.”
In his increasingly weakened state, Brandon could no longer eat by mouth, and doctors wanted to do a tracheotomy to install a feeding tube.
“He didn’t want that,” Matt said.
What followed were some hard end-of-life conversations.
“We had talked a lot about it, and he had told us, time and time again, that he would know when it was time,” Matt said. “In the hospital, he told us he was ready and that he would be OK and we would be OK. He made it clear he didn’t want to spend his last days in a hospital.”
The O’Harvers were determined to respect their son’s wishes.
“I have medical power of attorney,” Matt said. “We could’ve made him go through (the tracheotomy), but we would never do that.”
The family spent a few last, peaceful days together.
“Until the very last day, he was awake with us,” Matt said. “He had a bunch of projects he wanted to complete, and we finished them all.”
The O’Harvers will remember their son’s courage, his happiness and his strength.
“He was definitely stronger than either of us,” Matt said. “He made us better people, made a lot of people understand they can be better by following his example.”
“Life Story,” posted Saturdays on Leader Publications’ website, focuses on one individual’s impact on his or her community.