8 November 2022

Toby's back in Wagga after taking on the universe

| Chris Roe
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Toby Holt

Toby Holt shows off the lightsaber and droid he built at Disneyland. Photo: Chris Roe.

It’s been an extraordinary couple of months for Toby Holt.

The self-confessed nerd has travelled the world, taking a flight through the Grand Canyon, coming face to face with superheroes, buying a wand in Diagon Alley and going toe to toe with Star Wars villain Darth Vader.

“Disneyland and the Star Wars place (Galaxy’s Edge) was my favourite,” says the excited Wagga teenager as he brandishes an iconic sci-fi weapon.

“I got to build my own lightsaber and you get to choose what sort of hilt you want to build.

“There are different options for every bit and I decided to go with the theme of nature.”

boy with lightsaber

Toby got to build his own lightsaber at Galaxy’s Edge. Photo: Supplied.

Toby was diagnosed with Juvenile Huntington’s disease (JHD) in March of this year and it was a community fundraiser that made the trip possible.

The people of Wagga and Leeton got behind ‘Toby’s Dream’, exceeding the target to send the family on the journey of a lifetime.

“We are looking forward to spending as much time with Toby and creating some wonderful memories with our beautiful boy,” mum Louise wrote on their Facebook group.

“We love him dearly.”

READ ALSO Toby loves Marvel, D&D and Lego, and has two towns behind him after a tough diagnosis

JHD is a degenerative disease with no cure and while Toby’s speech and motor skills have been impacted, his sense of fun and wicked sense of humour have not.

With a cheeky grin, Toby hits a switch on the primal-looking hilt of his custom-made lightsaber and it sparks to life with a familiar buzz and a deep red glow.

“Dark side!” he says.

“I got to have a meeting with Kylo Ren.”

Dad Steve chuckles and says the villain offered some dubious advice.

“Because he had the red one, he said, ‘Make sure you know what the dark side asks’.

“It really was quite amazing, they are all really into it and they make it an experience and a half.”

Toby and Thor

Toby Holt has stars in his eyes after a whirlwind tour of the US. Photo: Supplied.

Along with Disneyland, the family visited Warner Brothers’ Harry Potter experience, Universal Studios, a baseball game and took a mind-blowing flight through the Grand Canyon.

“We got to go in a helicopter and fly all the way down to the bottom and landed near this park bench where we got to have some food,” grins Toby.

“It was really good.”

READ ALSO Different countries, same page: Leeton and London writers combine to launch lockdown memoirs

Both Steve and Toby expressed their gratitude to all the people who supported them and for the love they have received from their home communities in the Riverina.

An auction held in September was also very well supported, raising funds to help the family adapt their home and lifestyle to accommodate Toby’s needs.

“It really is all very overwhelming,” says Steve.

As we head into the final months of 2022, Toby is looking forward to an Aussie family Christmas in Leeton.

“My uncle’s got a big place. It’s a farm,” Toby says with a smile.

Original Article published by Chris Roe on Region Riverina.

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