Toby was diagnosed with Juvenile Huntington’s disease in March. Photo: Supplied.
In the ways that count, Toby is a typical nerdy teenager.
He’s into Lego, Marvel films, Dungeons & Dragons and he has just returned from attending Comic-Con in Canberra.
He is working his way through his year 11 studies at Wagga High where music is his favourite subject.
“I’m a singer,” Toby says proudly.
“I sing like, rap music, pop music, anything except for country!”
But as parents Louise and Steve Holt explain, Toby is also fighting a quiet battle after being diagnosed with Juvenile Huntington’s Disease (JHD) in March this year.
“It was around 2019 that we started picking up on things,” explains Louise.
“His balance was a little bit off and there were some habits that he had with his eyes when he turned to look and his eyes didn’t follow.
“There were strength things too, like when he’d do the dishes he couldn’t pick up a saucepan with one hand and dry it with the other because he just didn’t have any strength in his hand.”
Toby, Steve, Holly, Louise and Declan Holt. Photo: Supplied.
What followed was a procession of doctors, hospital visits, scans and assessments before the final diagnosis of the rare neurodegenerative disease.
“Unfortunately, it was over Zoom and I think when they rang and said they wanted it a meeting, we thought, ‘OK, maybe they’ve got results’,” says Louise.
“You just want to know what’s going on, but this sort of changed everything, because it is a degenerative disease and there is no cure.
“It was pretty shitty, to be honest.”
As his parents struggled to adapt to the diagnosis, Steve says Toby took it in his stride.
“We sat him down and told him and he said, ‘Well, it’s good to have a diagnosis’,” he says.
“Some of the doctors have been amazed at how he’s adapted to these changes in his movements and his balance and the spasticity that he develops.”
Louise says he’s been extremely tolerant of the symptoms of his condition.
“He has a lot of spasms in his hand now but he still likes to do his Lego and for the first time last week, I could see him getting frustrated that he can’t do those fine motor things,” she says.
But Toby remains firmly committed to his current Lego project, an enormous 14.5 kg replica of the Millenium Falcon from Star Wars.
“Yeah, it’s a really big one,” Toby laughs before Steve adds, “We might need to have a party and invite everyone over to help him get through it!”
When news of Toby’s diagnosis was shared with friends and family in Wagga and their former hometown of Leeton, the community rallied to support them.
“The generosity of people has been humbling in every sense, it renews your faith when people come together,” says Steve.
When Toby expressed a desire to visit Disneyland and Universal Studios in the US, friend Ali Pitts launched a fundraiser to make it happen.
“I’m very excited,” Toby says.
“There’s the Avengers Campus (Marvel) and Galaxy’s Edge (Star Wars) and I’ve got a queue pass to cut through the lines.”
Toby loves cosplay and has attended several pop-culture conventions. Photo: Supplied.
With a long health journey ahead and looming expenses as the family adapts their lives to support Toby’s condition, a group of Steve’s mates from touch footy have got together to host a charity auction at the Riverina Hotel.
Publican Darrin Walsh says they will stage an event including live music and a live hook-up with family and friends at the Wade Hotel in Leeton.
“A lot of the guys in the over-35s touch footy team are mates from growing up in Leeton so there’s a lot of interest over there as well,” he says.
“We’re selling tickets online and we’ve had a lot of people donate items that you can also bid for online.
“We’ll link up with the crowd in Leeton and have some music afterwards and that money we raise will go to Toby’s cause.”
Louise says she’s been amazed at the items that have been donated to support the family.
“Just everything that everybody’s done is just overwhelming – just truly overwhelming,” she says.
You can make an early bid on items in the online auction here or attend the live auction in person on 9 September from 6 pm at the Riverina Hotel.
Original Article published by Chris Roe on Region Riverina.
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