PHOENIX (3TV/CBS 5) -- This quarantine has been hard on everyone, but for some it's particularly tough--and even more life-threatening.

COVID-19 presents a huge threat to people with muscular dystrophy, many of whom already have respiratory issues.

"They are one of the most vulnerable populations," said Sarah Levin, Executive Director of Muscular Dystrophy Association Arizona. "With neuromuscular disease, they're at a higher risk of developing any kind of complications from COVID-19."

Levin says they're working hard to help Arizonans with Muscular Dystrophy navigate through this pandemic.

"We've been able to move all of our clinical services to telemedicine, enabling our clients to see their doctors and their medical teams virtually," Levin said. "So they're able to stay in their house and be safe and protected and also be able to get that necessary care needed from their physicians."

Unfortunately, the MDA is having to do this with fewer staff members thanks to fundraising efforts being postponed and the resulting necessary furloughs.

"Springtime is one of the busiest fundraising seasons we have. We typically are doing Fill the Boot, Muscle Walks, galas and golf tournaments," said Levin. "Just locally, by this time of the year, we usually have raised close to $600,000 to support all of our services that we offer within the state of Arizona. And that's not happening right now."

The Lackey family knows firsthand the amazing work done by the MDA. The organization helped fund the trials and research for Zolgensma, a life-saving drug given to Stella Lackey at just a few months old.

"For us, a lot of this quarantine, we want to do it," said Stella's father Jeremy. "Because we have to worry about Stella and Stella's health and how she might react if we were to catch anything."

Stella has Spinal Muscular Atrophy, a type of muscular dystrophy that makes it sometimes tough for her to breath. She currently uses a type of ventilator every night and was even recently hospitalized for breathing problems.

"I don't think a lot of people are taking it (quarantine) as serious because they've never had to see someone on a ventilator. They've never had to see someone on breathing support," said Stella's mother Samantha. "But I think parents who have had to see their child struggle...that was one of the hardest things in the world to see her struggle to just breathe."

Stella and her family are staying very strict with their quarantine in hopes of protecting her as much as they can. She's just hit a new milestone--sitting up on her own for the first time. That's never happened before for a baby with type-1 SMA who wasn't treated.

"That's given us a whole lot of hope," said Samantha. "But as always I hope that she can be a shining light for a lot of people and show a lot of people that even in hard times, you can find a lot of good."

To donate to MDA, please go to mdausa.org

 

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