A Byford family is inviting the community to help shine a light on Duchenne Muscular Dystrophy (DMD), in an effort to heal after hearing news no parent ever wants to hear.
When Jess Wright took her six-year-old son Jaiden for some medical tests in July, she had no idea the results would change their lives forever.
She said she felt numb upon hearing that her eldest son had DMD – a rare, incurable, genetic disorder characterised by progressive muscular degeneration which increasingly impairs a child’s ability to jump, run or walk.
The condition eventually impacts their lungs and hearts, shortening life expectancy.
“I cried for two weeks straight,” Jess said.
“It’s a hard thing to process – it’s mentally exhausting. Gene carriers are females – so I kept blaming myself, asking what I’d done wrong.
“But there’s nothing you can do about it.
“It’s been like grieving, except you’re grieving something you haven’t even lost yet.”
Jaiden’s dad, Josh Patriarca, said he was overcome by feelings of isolation and futility.
“I felt useless – you can’t make a cure appear,” he said.
In a remarkable show of resilience, the pair decided the one thing they could do was fundraise for Neuromuscular WA, the peak body for support and research into DMD and other neuromuscular conditions.
“Every dollar makes a difference if it means we could find a cure or stop it in its tracks so no one else has to go through it,” Josh said.
And progress has been made in this space.
Until recently boys were not expected to outlive teenage-hood.
Now, with advances in cardiac and respiratory care through steroid treatment, people with DND increasingly live into their 30s with some forging careers, getting married and even having children.
From 7.30pm on Saturday, December 16, the family is hosting a Christmas lights extravaganza at their property in Tigereye Avenue, Byford, in the pursuit of their $5000 donation goal.
There’ll be a sausage sizzle run by the Byford Volunteer Fire Brigade, face painting for a gold coin donation, children’s entertainers, a raffle, and the big man from the North Pole will make an appearance just after 8pm. All proceeds will be donated to Neuromuscular WA. Josh and his dad have spent two whole weeks setting up the 200,000-or-so lights on display.
And the street is getting in on the act too.
“One neighbour has letterboxed, asking people to put lights up,” Josh said
“We live in a pretty good community here in Byford, and a pretty good street too. Everyone’s pitched in – offering their front yards for the event.”
Planning the event has been cathartic for the family.
“Jaiden loves the lights – he’s been hassling his dad every day leading up to December to put the lights and inflatables up,” Jess said.
“We’re trying to make sure he has the best childhood possible.”
Anyone unable to attend on the night can donate to the Neuromuscular WA Christmas Appeal at https://neuromuscularwa.org.au/make-a-donation