A CHANCE encounter in a park led to an Aveley family receiving a devastating diagnosis for their child, but in the precious time they have left, they’re going to raise awareness around forms of muscular dystrophy as much as they can.
When Charlie Mone was four, his dad Barry was aware he wasn’t reaching his milestones, a situation he put down to the lack of vision in one of Charlie’s eyes.
His son was born with Persistent Hyperplastic Primary Vitreous, a disorder where a lack of gel behind the eye impacts vision, and at 18 months he had cataracts removed and an ocular lens inserted into his eye.
However as he grew up, experiments with Tiny Tots Tennis and Auskick proved too much for Charlie.
He couldn’t keep up with the other kids and, as is the nature of Australian Rules Football, if you can’t keep up you can’t get on the park.
While a physiotherapist suggested that Charlie was just not trying, a chance encounter with a stranger in a park confirmed that there was more to Charlie’s struggles, according to Barry.
“I was saying to myself, I’ve got large calf muscles, he has large calf muscles, once he realises how to use them he’ll be a sprinter,” Barry said.
“Unbeknown to us back then, he’s never going to sprint.
“We were at the park and a lady who’s son had recently been diagnosed with Duchenne muscular dystrophy (DMD) watched Charlie, and she came up to us and told us she knew what was wrong with our son.
“Without that we could still be in the darkness, the amount of people we’ve reached out to, there’s very few who understand it.
“There aren’t many people with a connection to it.”
That chance encounter occurred on a Saturday, when Charlie was eight.
The doctor they took him to on Monday had to Google the disease, and even then would only give them a general referral, meaning a wait of six to eight weeks.
Thankfully they sought a second opinion.
“The next day another doctor who had previously worked with the neurologist we were eventually sent to, pretty well straight away he put his finger on it.
“He was 99.9 per cent sure.
“The neurologist said that as well, within a week.”
Due to a lack of a protein called Dystrophin, Charlie’s muscles are wasting away and doctors predict that he will be wheel-chair bound within 12 months.
It is perhaps the most severe of muscular dystrophy known.
It was a devastating blow for the family.
“We’re still processing it to be brutally honest,” Barry said.
“It’s not that we can’t accept it, we have accepted it, but the reason we’re doing this is because we’re not just going to sit in a corner and accept it if you know what I mean.
“The more people I can make aware of this, and that’s my key aspect of it, is because we’re not the only family in Australia that had a late diagnosis.
“Charlie is very switched on and we’ve explained to him in great length and detail the situation that he is in, and it’s fatal.
“He’s fully aware.”
Now 11, Charlie is like every child – he loves Fortnite and Minecraft and takes a keen interest in maths and science.
Barry and his wife Kristy are doing everything within their power to raise awareness of muscular dystrophy in all its forms.
To raise money for Muscular Dystrophy WA, an organisation that has been invaluable to Charlie’s family, a Wedding Dress Charity Ball is being held at Mulberry Estate in the Swan Valley on Saturday October 31.
All proceeds go towards Muscular Dystrophy WA, and tickets are available at jemweddings.com.au
The last event sold 75 tickets, and Barry is hopeful that this year’s sales will exceed last year.