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Texan on a mission to do everything on her bucket list after receiving ALS diagnosis

Sara Wheeler discovered she had a progressive neurodegenerative disease on Mother's Day 2021. The 35-year-old then retired to travel and spend time with family.

AUSTIN, Texas — Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive and terminal neuromuscular disease. It affects as many as 30,000 people in the U.S., according to Johns Hopkins Medical Center. 

Thirty-seven-year-old mom Sara Wheeler is one of the few who has the rare disease. Her journey began when she noticed her inability to do certain things. 

"I was trying to put things up high, and I realized I couldn't stand on my tippy toes," said Wheeler. 

She visited numerous doctors, and no one diagnosed her with ALS. They told her she was too young. She was looking for answers for three years, and it wasn't until May 2021 that a doctor finally gave her the diagnosis.

"It was really nothing you can say or do," said Wheeler's husband. "It was just devastating."

Wheeler and her family decided it was time she retire from her nursing career. 

"ALS is a time stealer," she said.

She's now traveling the world, spending time with family and playing video games. 

Credit: Sara Wheeler

"We're always busy doing things," said Wheeler. "But we kind of got the motto of just live life like there's no tomorrow."

Wheeler has been receiving treatment for her form of genetic ALS through spinal injections each month at the Austin Neuromuscular Center. She drives once a month from Fort Worth to Austin for her treatments.

"This is a medicine not for ALS," said Dr. Yessar Hussain, who works at the center. "It's a disease-targeting therapy. It's a gene therapy for a specific mutation of ALS."

The goal is to stop the creation of harmful protein and hopefully halt nerve and muscle damage and death.

So far, Wheeler said she notices improvements in her muscles. When she gets cramps, they're not as painful. They also fade away much quicker. 

While it was not always the case, Sara must now wear braces and use a cane to provide support to her legs. Despite the obstacles she faces, she's determined to live her life to the fullest every day.

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