10 hours ago
North Texas family raising awareness of muscular dystrophy struggles
With his face focused on the screen, Brandon Hale's fingers moved like lightning as he created masterpieces in Minecraft.
"I'm currently building a house," the typically shy 16-year-old said when gently asked. "Took me two years to get good."
He is bright and funny, but Brandon's body is slowly betraying him. He was diagnosed with Duchenne muscular dystrophy at age 5.
Family remembers the day everything changed
"I can remember the day he got diagnosed," said his older sister, Emily. "I can remember sitting on the stairs while my mom was on the phone with the doctor, and then the air in the room — the air disappeared from the room the second we kind of found out."
Duchenne is a severe form of muscular dystrophy caused by the body's inability to produce dystrophin, a protein essential for muscle health. Over time, all muscles — legs, arms, lungs, and heart — deteriorate.
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Living in the moment, despite the odds
"We just try to take it one day at a time and do the best we can and enjoy every day," said Brandon's mother, Margaret Hale. "Because I know when you think about the big picture — that it's a degenerative disease and it's going to cost him his life at some point."
Still, Margaret refuses to lose hope.
"But you never know. I mean, you don't have tomorrow necessarily," she said. "So, you've got to make the best of what you've got right now."
Father's health adds to family's burden
Even "right now" is hard. Brandon's father, Eric Hale, is in a Denton rehab hospital. A few weeks ago, he woke up with a swollen foot. It led to a below-the-knee amputation due to complications from diabetes.
"I just want to bring awareness to it — the struggles, the everyday struggles," Eric said.
And not just his own, but Brandon's and those of other families navigating this disease. Eric and Margaret both grew up watching the Jerry Lewis Labor Day MDA telethon. When it ended in 2014, he said, much of the awareness disappeared—but the disease did not.
Financial strain and lack of support
"You know, most people probably think we get assistance, and we don't," Eric said. "The only time we've ever gotten help was when he first started taking the steroids. If we had to pay for them every month until we hit our deductible, they'd be almost $5,000 a month."
Eric said he speaks for "all the families falling through the cracks of a broken system" — earning too much to qualify for significant assistance, but not enough to meet their son's growing needs.
"We've drained our savings. We've drained our retirement," he said. "Just to provide for my kids. And again, it's a struggle every single day. I want — both my kids — but to make his life as comfortable as possible for as long as he's got."
A father's love and unspoken fears
Eric called his teenage son "my hero."
"Both my kids are. But the strength that that little boy has..." His voice quivered. "We haven't talked about it. But I'm smart enough to know that he's done his own research on it. I have no doubt. But we've never had that conversation with him because I can't."
He paused, overcome with emotion.
Home not built for disability
The emotional toll must wait. Each day, the Hales face practical challenges, like a home that isn't accessible.
"The doorways are just not wide enough for him to even get through in the wheelchair," Margaret said. "A roll-in shower for him. And then, just maybe widening some of the doorways to help make it easier to get him in and out. Those are the real major things we would want to have done if we could."
Family sacrifices to stay together
So, day to day, they do the best they can.
Margaret, who built a career in education, is now a full-time caregiver and homeschool teacher. She's looking for a part-time, remote job to help support the family.
Emily was accepted into Texas Tech but is postponing that dream to stay home and help.
"I mean, that's my family," Emily said. "I would do anything for them. So if that means me working the next couple of years of my life, I mean, it's not the end of the world to try to figure out what's next while still being here for them."
Focusing on today, not tomorrow
Even if "what's next" is simply enduring the "right now."
"I don't think about 10 years from now," Eric said. "I think about a month from now, two weeks from now, tomorrow. That's all I can do."
