There are not many teenagers like Ben Lindsay.
The 14-year-old has a rare neuro-muscular degenerative disorder, but also a wisdom and an attitude well beyond his years.
Ben was diagnosed with Friedreich Ataxia when he was just 12 years old.
A debilitating, life shortening condition without a cure, FA as it is commonly known, affects only one in 30,000 people in Australia.
The genetic disorder leads to a loss of muscle coordination, fatigue, vision impairment, hearing loss, slurred speech, scoliosis, diabetes and serious heart conditions.
Ben’s mum Kellie Lindsay said it had been a challenging few years for the family.
“Ben was diagnosed in October 2016 – it took us a few years to actually get a diagnosis, we had a few misdiagnosis's along the way,” she said.
“He has to use a wall to walk, he only goes to school three days a week and can’t carry things.
“He struggles to dress, can’t do buttons or shoe laces and struggles with zippers and he often needs assistance just to walk from room to room depending on his level of fatigue.
“He struggles with most things that kids his age take for granted.
“It’s just a part of our life now.”
The avid sportsman said he noticed changes to his body starting to effect his athletic performance.
“I was falling over and noticing that my balance was getting progressively worse,” he said.
“All I was focused on when it was happening was why I wasn’t performing well in my sports – baseball, AFL, soccer and cricket.
“I didn’t really think it would be a problem in the future, I was just wondering why I wasn’t playing as well and I wanted to focus on getting better.”
I get sad when I look back on my sporting achievements, that I can’t do them now but other people never had that opportunity.
- Ben Lindsay.
Ben said his condition was progressing faster than they expected.
“I’ll need a wheelchair and my speech is starting to slur a bit more,” he said.
“I’ve got scoliosis along and that will get worse.
“I have heart disease and if that gets worse, it could kill me.”
But, despite everything, Ben is determined to fit as much adventure into his life whenever he can – starting with a trip to Phillip Island this weekend to check out Porsche Racing Australia’s facilities.
The true blue Holden fanatic is excited to test the cars, tour the workshops and chat to some of the drivers.
Ms Lindsay said the invitation for the Halls Head family to take part came out of the blue.
We can’t believe that it’s happening, it’s very special and you just don’t expect people to be so kind.
- Kellie Lindsay
“There’s a mechanic who has FA who lives in Melbourne and he got in contact with me – he had seen Ben on Instagram and wanted to get in touch with him to invite him to the event,” she said.
“He’s organised an amazing day for Ben, he’s tried to cram in as much as he can while Ben is there.
“I don’t even have any words – all this for somebody he has never met?
“We can’t believe that it’s happening, it’s very special and you just don’t expect people to be so kind.”
Family friend Kylie Hewitt set up a GoFundMe page and raised almost $3000 to ensure the family made it to Victoria to enjoy the experience.
“Having a chronic illness or a disability in the family is expensive for anybody, let alone a single mum who has to take lots of time off work to go to those appointments,” Ms Hewitt said.
“This is Ben’s dream – for as long as I’ve known Ben he’s only ever wanted to talk about cars and cricket.
“Ben has never expected special treatment so it’s about time something happened for him – we don’t know what the the future holds as FA progresses at different rates for everybody so let’s do it now.”
This is Ben’s dream – for as long as I’ve known Ben he’s only ever wanted to talk about cars and cricket.
- Kylie Hewitt
The inspiring teenager has maintained a positive attitude throughout his whole experience with FA.
“I’ve had a chance to be able to run and walk which is lucky,” he said.
“Some can’t walk from the day they’re born so they don’t get any of the experiences that I’ve had.
“I’m very fortunate that I got the chance to have a good time and play sports.
“I get sad when I look back on my sporting achievements, that I can’t do them now but other people never had that opportunity.”
Ben, his younger brother Jak and mother Kellie will head to Victoria on Thursday for their once in a lifetime experience.
For more information about Friedreich Ataxia or to donate to help find a cure, visit fara.org.au.
