Louise, Toby and Steve Holt celebrate a promotion at Wagga’s PCYC. Photo: 219acu/Facebook.
Wagga lad Toby Holt is soldiering on and maintaining a positive outlook despite ongoing health challenges as he grapples with Juvenile Huntington’s Disease (JHD).
“He’s going alright,” said his dad, Steve.
“He just graduated at Wagga High and they gave him the ‘overcoming adversity award’ and he got the biggest cheer when he got up to get it.
“His mates have really got around him and looked after him, which has been excellent.”
JHD is a neurodegenerative disorder that has impacted Toby’s mobility and speech and the community has rallied behind the family to help raise much-needed funds for his care.
This Friday (13 October), the team from ‘Toby’s Journey’ is hosting a dinner and charity auction at the Riverina Hotel with a fantastic three-course feed, and a great range of items and experiences to go under the hammer.
“People have donated some fantastic stuff like a dinner for two at Pastorale with unlimited food and drink, there’s some overnight accommodation and you just can’t fathom the amount of goodwill people are sending our way,” Steve said.
Toby recently turned 18 and graduated from Wagga High. Photo: Supplied.
Darrin Walsh from the Riverina Hotel said the event would be the second one they had hosted after a successful fundraiser last year.
“We’ve got some online bidding for some items already and we’ll have lucky door prizes and there’s a bunch of things to auction off on the night from experiences to sporting memorabilia,” he said.
“People have been very generous again, donating stuff and their time to help young Toby out.”
While life has changed dramatically for Toby and the Holt family since his diagnosis in March last year, Steve says the 18-year-old retains a wicked sense of humour and a love of geek culture.
“His balance is not the best and he’s had a few falls so we’ve put rails in at home, but he’s still cheeky as hell and still loves his Marvel and Lord of the Rings and he’s always discovering something else to get into,” said Steve with a chuckle.
“The thing that is great with modern technology is that he can stay in touch with his mates online.”
As he continues to adjust to his illness, Toby remains as connected as possible to friends and community.
He has continued to be a committed member of his Wagga cadet unit (219 ACU), which he joined in 2020 and participates from his wheelchair.
In honour of his commitment, the battalion’s Cadet RSM Evan Hookway had the pleasure of promoting Toby to the rank of Cadet Lance Corporal during a ceremony at Wagga’s PCYC.
Toby Holt’s fellow cadets from 219 ACU watch on as Cadet RSM Evan Hookway promotes him to Cadet Lance Corporal. Photo: 219acu/Facebook.
Adding to the challenge the family faces, Steve was also diagnosed with Huntington’s Disease this year.
“It’s a genetic disorder and it’s from my side of the family, and that’s the terrible thing with these diseases,” Steve explained.
“It tends to cast quite a wide web and I’ve got cousins who have been tested and one cousin who was originally diagnosed with Parkinson’s and she then got re-diagnosed with Huntington’s.
“It’s a bugger of a thing.”
If you’d like to support Toby, you can book a ticket to the dinner at the Riverina Hotel or get involved in the online auction here. Check out the event’s Facebook Page for more information
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