Fate had different plans for Austin Jones, who was born in 1996 with a rare disease that was expected to shorten his life span to only two years.
Now, after 27 years of struggles and victories, Austin isn’t just alive – he’s the father of newborn twins, a devoted husband and a business owner who says his condition is the “biggest blessing possible.”
When Michigan’s Austin Jones was born with spinal muscular atrophy with respiratory distress (SMARD), his parents were told their baby would not survive past two years.
The rare disease, which causes muscle weakness, paralysis and respiratory failure, has a life expectancy of less than 13 months. According to the National Association of Rare Disorders, “Progression of muscle weakness typically stops within two years, but, in a young child, the consequences of severe neuromuscular weakness are progressive.”
Austin, who beat the predicted two-year deadline, has been on a ventilator and in a wheelchair since he went into respiratory failure in 2003.
“Some people might think ‘that sucks’ but I say it’s the biggest blessing possible. It’s given me a life and a perspective I could have never imagined,” Austin writes on Live Intrepid, his company’s website.
The name of his company, that sells clothing, is inspired by his philosophy to “live fearless and live adventurous. Life is too short to be afraid, take every adventure while you have the chance!” Live Intrepid aims to raise awareness and funds for SMARD, which is so rare that it has an estimated impact of only 100 people worldwide.
Austin continues, “I’ve been to 38 states chasing my dreams with my best friends, I’ve met thousands and thousands of amazing people and hopefully changed a life or two.”
hanging lives
The inspiring man has definitely changed more than one or two lives.
Boasting about Austin’s accomplishments, and defiance to the disease expected to limit or kill him, big brother Jason posted a video on TikTok of the happy wedding day in August 2023.
The clip, which shows Austin dancing in his chair with their mom, is captioned “His whole life he was told that just about everything was impossible. [His] whole life he’s been proving them wrong.”
The majority of netizens gushed over the sweet moment, sharing comments like, “Stephanie [mom] looks so beautiful!!!! And Austin so handsome. This makes me happy.”
“Such a beautiful mother/son dance moment together,” writes a second, while a third, shares, “
“LOVE this moment for you and YOUR MOM! Being told ‘you child will never…’ is heart shattering. I know she will relive this moment forever.”