Brody Taylor loves dinosaurs and animals, and if the 7-year-old Hahnville boy gets rolling on one of those subjects, you’ll probably learn more than a few things.
“He’s extremely smart,” said his father, Corey. “He’ll tell you all of these random facts, and we’ll Google or ask Alexa to see if he’s right. And ninety percent of the time, he’s correct.
“He has a very strong will. Even though he deals with all of this, he doesn’t look at it as limiting. He accepts it all as it is.”
Taylor is also a fighter and has shown immense strength pushing through significant everyday struggles. He was diagnosed with Duchenne muscular dystrophy in 2020. It’s a severe genetic disorder that causes progressive muscle weakness and loss of mass due to a lack of the protein dystrophin.
Duchenne is a rare form of muscular dystrophy, and very debilitating. Treatments have advanced over the years and extended the average lifespan of those suffering from Duchenne muscular dystrophy (DMD), but there is no cure and the illness significantly shortens life expectancy.
Tasks that most people take for granted can become very difficult. He cannot participate safely in activities involving running, jumping, or climbing. Taylor has learned to recognize his own limitations. Rather than playing physically with other children, he’ll sometimes choose individual activities or find children who are sitting down. His parents stressed that this isn’t necessarily because he doesn’t want to participate. He simply understands what he can and cannot physically do.
At school, DMD can also affect speech and learning. His parents noted that children can be labeled as struggling academically when they may simply need more time to process and complete tasks.
Taylor faces his particular challenges each day. He’s also extremely loving, caring and funny, Taylor’s mother Lindsay said, and he’s very shy at first but once he’s out of his shell, he lights up a room.
“He inspires everyone around him with his positive attitude and incredible spirit,” said his uncle Quinn Landry. “He’s just an amazing little kid with the best personality.”
Landry gave a nod to his two older sisters, Lily and Ellie, “who adore him” and who do a very good job of looking after him.
“Lily and Brody are inseparable. They’re like two peas in a pod. I call them double trouble. He doesn’t call her Lily – he calls her Tiny,” Landry said.
Taylor’s a prolific question-asker and can overwhelm his parents with questions. He’s quiet around strangers and at school but becomes extremely talkative and expressive when he’s comfortable and in his own environment. His father jokingly described him as a “mini engineer” because of his interest in blocks and building things.
There’s not a tremendous amount of public awareness about DMD. His parents would like to see that change and are advocates for increasing that awareness. Increased knowledge about it, they said, could be the difference when it comes to a community understanding what a child is experiencing – and why they’re experiencing it.
A child having a bad day, struggling in school or having a behavioral outburst may have an underlying reason for it, be it DMD related or another illness or disability. DMD can involve cognitive and behavioral effects in addition to physical symptoms, Corey noted. Many children with DMD have OCD traits, and some also have autism.
Steroids are commonly used to help protect heart and lung health for those battling DMD, but they can cause irritability, mood swings and weight gain.
“People who don’t know, they’ll just think ‘this is a bad child.’ But the problem is they simply can’t control it,” Corey said.
It’s an example of how a little knowledge can go a long way, he said.
“Anywhere you go, there are cancer awareness days at a school, but there’s not really anything for something like this. And not just Duchenne, but other illnesses a child might be dealing with that the public may not know much about,” Corey said.
Likewise, his parents are advocates for improving accessibility for people with disabilities. Corey pointed out that many places technically meet accessibility requirements but aren’t necessarily designed around the practical needs of someone with a disability – doors without easy-open buttons, insufficient accessible bathroom stalls and grab bars, and buildings designed without mobility limitations in mind.
Brody continues to push forward.
He also has been pretty excited lately – he recently learned that the family will be taking a trip to Disney World later this year, courtesy of Kids’ Kids, a nonprofit that aims to provide hope and happiness to families of children with critical illnesses.
“He’s on his little Kindle and he’s looking – I think like the first two weeks after we told him about it, he was on there looking for rides and it’s, “Dad, look, Mom, look at this ride. We can go do this, we can go do that.’ So, they’re all excited about it. I know he’s really excited about it,” Corey said.
