The motorized transport chair would allow Mackenzie, whose family has financially been impacted by COVID-19, to get in and out of her family’s car by herself, instead of her mom having to lift her.
Mackenzie Hurt, a 14-year-old girl with muscular dystrophy, is getting a little tired of her mom having to lift her in and out of their car. The eighth grader at Legacy Traditional School in Phoenix said she doesn’t like the feeling of being watched by bystanders.
“When I was younger, it wasn’t really that big of a deal because I was so little; it just seemed normal to me,” Mackenzie told The Copper Courier. “But the older I get, the more I see people do stare. And even if they’re not trying to be rude by staring, it’s still kind of nerve-wracking sometimes.”
When Mackenzie’s family went to the Ability Center, a mobility equipment store, they were looking for a van that could accommodate the 4,000-pound power chair Mackenzie takes to school. But when they found out there were no affordable options, the store recommended a motorized transport chair made by BraunAbility that can help Mackenzie get in and out of cars on her own.
“I didn’t even know that was a thing,” Mackenzie said. “I thought you had to have a special car for me to be able to drive. I didn’t know you could put a seat in any car.”
However, the chair costs $10,000 and is not covered by the family’s insurance because it isn’t considered “medically necessary.” This is the case for much of Mackenzie’s equipment that improves her quality of life – her mom Malia Bruhn said the family spent about $15,000 out-of-pocket last year to cover expenses for items like ramps and a power chair.
Bruhn said she also feels the motorized chair could help Mackenzie feel more comfortable getting around.
“I notice that the older she gets, the more self-conscious she is of other people looking and watching, so I just think it would make her feel a little bit more confident if she’s able to get in and out herself,” Bruhn said.
The chair would also help Bruhn herself. When Mackenzie’s mom lifts her in and out of the car, she’s picking up over 100 pounds of dead weight because Mackenzie can’t hold herself up.
“Her whole life I’ve kind of just picked her up and thrown her in. It hasn’t been a big deal,” Bruhn said. “[The chair] would just help save my back.”
So far, Bruhn has been able to save up $5,000 and earned about another $2,000 through a GoFundMe campaign. Bruhn switched over to medical fundraising platform Help Hope Live for the remaining $3,000 after she learned the money she raised on GoFundMe had to be reported to the federal government as “unearned income” and could jeopardize Mackenzie’s Social Security payments.
So far, the family has raised $300 with the Help Hope Live campaign in about a month. The nonprofit regularly communicates with the family and helps them find ways to spread the word about Mackenzie’s story.
Mackenzie looks forward to the day when the device can help her become more independent. Bruhn said the chair can even be transferred from the passenger’s seat to the driver’s side, so Mackenzie can use it when she’s old enough to start learning how to drive.
“If [Mackenzie] is able to get a driver’s license, that’s one of the adaptive equipments that can go in a car to make sure that she’s able to drive safely [and] get herself in and out without having to rely on anybody else,” Bruhn said.
Pandemic Adds to Difficulties
Because Mackenzie has to stay as healthy as possible, she hasn’t left the house in about six weeks. Bruhn has made an effort to stay home as well to avoid picking up the virus and bringing it home to her daughter, leaving them to rely on pick-up and delivery orders for groceries.
Mackenzie usually goes to physical therapy once a week, but now she has to attend her appointments virtually, which she says it is difficult because she has to figure out exercise movements on her own that a therapist would usually support in person.
The eighth grader, a National Junior Honor Society member who hopes to attend Northern Arizona University for interior design, is also figuring out how to finish up school while stuck at home. She doesn’t get to have a graduation ceremony before she heads off to high school. So far, the family said, the school has only floated the idea of putting up a sign to celebrate their grads.
Bruhn, who worked as a substitute paraprofessional at Mackenzie’s school, lost her income when schools closed due to the pandemic. Previously, she said she didn’t monetarily qualify for regular unemployment, but now does under the Coronavirus Aid, Relief, and Economic Security Act’s expanded qualifications. However, she probably won’t see a check until after Arizona launches its Pandemic Unemployment Assistance system on May 12.
Denise Belcher, Mackenzie’s Help Hope Live representative, said many families, especially those who are experiencing medical issues, are dealing with similar struggles.
“There are so many people who say, ‘I could never ask for help right now.’ But right now we’re here to tell people, especially families like Mackenzie’s, that it’s OK to ask,” Belcher said. “Just because there’s a pandemic going on doesn’t mean that her medical needs aren’t important.”
Editor’s Note: A previous version of this story said Malia Bruhn had been “laid off” from Legacy Traditional Schools. Her employer clarified that she lost work as a substitute employee due to schools closing, but the school did not lay off any workers.
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