15 March 2024

Toby is not letting Juvenile Huntington's stop him from living his best life!

| Jarryd Rowley
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Orgainisers of Toby's Big Ball Slap

Toby and his father Stephen (on golf kart) have been blown away by the support of the Wagga community since their diagnosis of Huntington’s Disease in 2022. Photo: Jarryd Rowley.

Juvenile Huntington’s Disease is a rare and aggressive genetic neurodegenerative disease that affects the brain in young children and teenagers.

Those who are diagnosed with the disease have their motor functions restricted and their life expectancy limited to 10 – 15 years from the time of diagnosis.

Despite the daunting nature of the disease local legend Toby Holt, who was diagnosed in March 2022, has refused to let his condition affect his infectious smile and overwhelming positivity.

His bright personality has won the hearts of many around Wagga, some of whom hit the Wagga City Golf Course on Friday (15 March) to raise money so that Toby can continue living the best life he can.

More than 50 golfers arrived to support Toby’s Big Ball Slap charity event and despite not everyone possessing the best golf skills, absolutely everyone had a fantastic time.

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“I want to thank everyone for coming today,” Toby said.

“It’s so crazy the amount of people who have come here, it makes me very happy!”

Toby, a die-hard GWS GIANTS supporter, may be at odds with his Carlton-supporting father Stephen when it comes to footy, but the pair have both been blown away by the support of the Wagga community, which has helped raise more than $100,000 since the beginning of 2023.

More than 50 people turned out to play golf on Friday at Wagga City Golf Course

More than 50 people turned out to Wagga City Golf Course to support Toby and his family. Photo: Jarryd Rowley.

“This is the second time we’ve held Toby’s Big Ball Slap,” Stephen said.

“The event started with a bunch of my lifelong friends getting together; friends who I played footy with, who I’ve worked with, all getting together and organising it.

“It’s so heartwarming and humbling to see them all here today. They’ve wrapped an arm around Toby and my wife and supported us. Wagga has so many giving people and we’ve been on the receiving end of that the past two years since Toby has been diagnosed and I know if it was somebody else’s child in this position, we’d be among the first to support them too.

“I believe 98 per cent of the world is good, giving people, and events like today prove that.”

Golfers enjoyed sunny weather on the golf course

Several of Stephen’s closest mates (dressed in orange and black) came together to organise several charity events over the past two years. Photo: Jarryd Rowley.

Since 2023, friends of Stephen and Toby have held several charity auctions which have helped add to the total. Items included signed footy guernseys, sporting memorabilia and golf equipment. Funds raised have helped Toby live some of his biggest dreams which include a trip to the USA, with a planned trip to New Zealand later this year, as well as capturing tickets to the Taylor Swift Eras Tour in February.

Toby’s diagnosis prompted Stephen to get himself checked due to the genetic component of Huntington’s Disease and unfortunately, he is a carrier for the condition.

“Huntington’s is detrimental to the nerves and the brain,” Stephen said.

“A lot of people say it’s like having MND, Alzheimer’s and Parkinson’s all at the same time. Unfortunately, it is genetic, so I never knew until Toby found out.”

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Some of the biggest supporters of the Holt family have been the crew at Wagga City Golf Course who have helped Stephen and his mates organise this year’s Big Ball Slap.

“Marcus, Glen and the guys down here at Wagga City have been godsends,” Stephen said.

“Marcus said to us that he loves doing charities that have a local feel and he has done his absolute hardest to make sure this event today goes well.

“At the end of the day, it’s all about seeing the smile on Toby’s face. We’re so thankful for everyone who has come out. It’s not really about the golf but making sure everyone has a fun time. Whether that is swinging the clubs or just enjoying the barbecue, we are so thankful for everyone who has been a part of all the charity work we’ve done.”

People who would still like to donate to Toby and his family can do so by sending money to the following bank account: Account name: Toby’s Journey, BSB: 112-879, account number: 443570096.

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