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St. Louis 11-year-old won't let muscle disease stop her

Tilly McRoberts plans to run for president one day to help make the country more inclusive

ST. LOUIS — Some people are like magnets, you're just drawn to them.  

That is most certainly the case for 11-year-old Tilly McRoberts. 

On this day, she's just home from school and no one is more excited to be back in class.

"Instead of it being one class," she said happily. "They actually put three elementary schools combined. So there's more kids to talk to!"

Tilly has started middle school after a summer of travel. There was camping and there was the beach. But the beach is something she'd prefer to skip next time.

"I was sitting on the beach and the wave and the wave knocked me over. So I don't like the beach," she said with a laugh.

As she explained, while other kids could run from the waves, that's not really an option for her.

"I'm in a wheelchair because I have a disability called SMA. That's short for Spinal Muscular Atrophy," she said.

SMA most often affects babies and children and makes it hard for them to use their muscles. Just breathing and coughing can sometimes be difficult, which means for Tilly's family, the COVID-19 pandemic is even more frightening than it is for the rest of us.

"Literally as it hit, Tilly came down with a respiratory virus," said Tilly's dad Glen McRoberts. "She was in Barnes hospital for 12 days and in the ICU. Obviously, very nervous that it was COVID."

Fortunately, it wasn't COVID and she recovered. Unfortunately, the pandemic has canceled the last two years of her favorite summer activity, MDA Camp.

"It's a sleep-away camp where you get to be with people and make new friends that are just like you and it's all-inclusive for everybody," Tilly said enthusiastically. "And it's just the best week of the summer."

But Tilly's attitude has always been, when everything isn't the best , you make the best of everything.  And that includes living with SMA.

"As much of a challenge as it is, it's not something that will define who Tilly is," her dad said proudly.

In other words, mind over muscles.

"One of my favorite things in school is learning about presidents," Tilly said. "So I like Social Studies because we get to learn about the past."

And the past has her thinking about the future. She said after she becomes a lawyer to advocate for the disabled, she plans to run for president.

"Trying to make life more inclusive for everybody," said Tilly.

Tilly is already making speeches, as an ambassador for the Muscular Dystrophy Association. Touting some of their new breakthrough drugs.

"It helps because it helps make us stronger, so we can do more things and become more inclusive," said Tilly.

If you plan to stop at nothing then attitude is everything. Tilly McRoberts, a magnetic force of hope.

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