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.”
Our wedding is coming up fast. It’s Saturday August 19th in Leslie, Michigan. It’ll be at Whitetail Acres! There’s…Posted by Austin Jones on Monday, April 10, 2023
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.”
Changing lives
The inspiring man has definitely changed more than one or two lives.
Help me welcome Piper Rose and Penelope Layne to the world!! Piper is 5lbs 6oz and Penelope is 5lbs 2oz both are 18 inches.Posted by Muckala Marie Jones on Saturday, September 23, 2023
In 2021, Austin met Muckala on social media. Muckala, who at the time was a single mom caring for a three-month-old Hazel, made the first move after seeing an image of him along with his brief story.
In a TikTok clip featuring the young couple, Muckala explains she sent him a personal message saying he was “perfect” and “didn’t need to explain himself to nobody.”
Austin, whose indomitable spirit and sharp sense of humor jumps through the screen, adds “one day she sent me a message and said she comes with a lot of baggage. I said, ‘it’s okay, I have a wagon.’”
After seven months of dating, Muckala and Hazel moved in with Austin, the two exchanging vows on August 19, 2023, just in time for the arrival of Penelope and Poppy, who were born on September 23.
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.”
But there are also many cyber trolls who jumped in with “vile” comments, accusing Muckala of marrying Austin “for his money.”
“This is unbelievable. She’s doing this for money not for love,” suggests one. Another writes, “Must be a huge disability check.”
Happy due date ❤️❤️ Even though you girls came early you’re perfect in every way! When we brought you home Piper was…Posted by Muckala Marie Jones on Thursday, October 12, 2023
Other cruel netizens targeted his condition. “Bet her parents are like WTF,” to which another user adds, “I bet your parents say the same thing every time they look at you.”
Jason responded, sharing that his sister-in-law married Austin because they are “soul mates” and deep in “love,” not for the money, which his brother does not have.
Austin also addressed these attacks on his Facebook page, calling out those responsible by sharing screenshots of the hateful comments. He captioned the post, “I didn’t know it was possible to be as miserable as the people in these comments…”
Refusing to let the negativity break them down, Austin and his new bride are relishing their time as parents of three beautiful children.
Since the birth of Poppy and Penelope, the couple has shared many photos and clips, offering fans a glimpse into their life as the doting parents of twins, who some say, “look like [their] daddy.”
“There’s no denying that these are my babies….” Austin writes in a post where he’s seen cradling the twins. “They can’t walk either.”
Congratulations to the new parents! We’re sure Austin Jones will continue to inspire people across the world with his determination in making the most of his life!
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