ROCHESTER, Minn. (KTTC) — KTTC is honored to introduce viewers monthly to some of the youngest among us, facing the unthinkable with bravery and optimism. In our sixth “Kids With Courage” segment, Caitlin Alexander introduces us to 10-year-old Braylin Hiley.
Braylin isn’t afraid to speak her mind.
When she learned she was going to be featured on the news, she exclaimed to her parents, “OMG!”
But she speaks differently than most.
“I would say 80% of it is her eye gaze machine now,” said Braylin’s mother Shannon.
To picture the technology Braylin uses to communicate, her parents said it may be helpful to picture British Theoretical Physicist Dr. Stephen Hawking.
Braylin’s father Matt further explained how Braylin’s eye gaze machine works.
“It reads her eyes, and then she can navigate a computer and it has a dwell time on it, so she can select letters or create sentences or pre-made phrases,” he said.
Braylin has spinal muscular atrophy or SMA.
Paul Boesch, D.O. is a pediatric pulmonologist at Mayo Clinic. He’s been seeing Braylin since she was about 2 years old.
“What this [SMA] means is the nerves that control the skeletal muscles, especially closer to the body, they deteriorate over time, resulting in progressive weakness,” Boesch said.
He explained there was a time when most kids with the type of SMA Braylin has were not expected to see their second birthday.
Shannon and Matt said they learned what SMA was on May 13, 2011. It was a Friday, the 13th.
They’d brought home their newborn baby girl, unaware that anything was out of the ordinary.
After a couple of months, Braylin had a lot of cold symptoms and even a scare when she turned blue.
“One day we went in, the doctor wanted to see her, and he did some reflex tests on her, and she had no reflex,” Matt said. “Within hours, we met with the neurologist, and of course they say don’t look it up online, but it could be SMA.”
Braylin’s parents traveled to seek care. They wanted to do everything they could for their little girl. They took things day by day, eventually adding a little brother to the mix.
This past December, Braylin celebrated her 10th birthday.
As far as treatment goes, Braylin uses machines to do things like breathe, eat and cough.
Her family works very hard to support her positioning.
She’s also taking some relatively new medications that Dr. Boesch said can improve life quality and life expectancy in patients.
“All this time, one thing that’s not affected at all is the brain, and so they’re completely there. They have their full personalities, their full intellect, all of it is normal. So, these kids are often trapped a little bit in their bodies,” Boesch said.
That means Braylin is mentally just a normal 10-year-old girl. She loves LOL Dolls, YouTube and crafts.
She’s also plenty busy with school.
“She gets in to do her morning meeting at 9 with her classmates,” Shannon said. “Her expectations are the same. She does her math, her reading.”
“She loves to joke around,” said RPS Special Education Teacher Janet Nicholson. “As you get to know her, she has a very strong will.”
“She always just had this happiness about her and this normalcy about her even though she had this diagnosis,” Shannon said.
Braylin’s parents are currently seeking some help with Braylin’s care. If you or someone you know is a nurse and would be interested in learning more, please email [email protected] They are currently accepting applications.
Watch Braylin’s story (above) to hear her tell the KTTC crew a “knock knock” joke!