Jack Roberts, who has Kabuki Syndrome, is hoping for his first bike, but he needs help to raise the $10,000 to buy it. Photo: Kate Russell.

Jack, 14, hoping for his first bike


Fourteen-year-old Jack Roberts is saving for his first bike, but he needs the help of the community to make it a reality.

You see, Jack isn’t your ordinary teenage boy and the bike he needs comes with a $10,000 price tag.

The Stoke teenager was born with a rare genetic disease called Kabuki Syndrome, which means that he has very low muscle tone, and can only walk short distances.

Jack’s mother Sue says it would be “life-changing” for Jack and would help to increase his endurance, fitness, muscle tone, overall health and enable him to participate in the range of sports that he enjoys.

“He loves sports and goes to the pool, but as he gets older, the more his body has to work to hold itself,” she says.

The sort of bike that Jack needs is actually a huge side-by-side custom-made trike, which he was able to try out when Trikes NZ visited Nelson recently.

“He’s never had a bike and we’ve thought on and off how nice it would be. But he’s got no sense of balance. So when Trikes NZ came to Nelson we went to have a look and what they had was amazing. He had a try on one with his older brother and had an absolute ball.”

The trike allows someone to sit next to him, and they can both pedal. It also has a motor which can kick in for hill-climbs or long distances.

But Sue says the trike is “way out of their price range”, costing $10,029 – not to mention an additional $1500 for a safe storage shed.

So far they are about one-third of the way there, thanks to some fundraising efforts and the IHC donating $2500 – but they still have a long way to go.

A givealittle page has been started, which Sue is hoping they can boost with the help of the community. They also have a cafe evening planned for August 6 at Saxton Stadium.

“It melts your heart that people care enough to help you out and we are absolutely so grateful to the people who have helped so far.

“Every kiwi kid should have a bike – it goes without saying. He and his brother can bike to Wakefield to visit his sister and he’ll be able to have his teacher aide at Nayland College ride with him at school.”

To help Jack, you can donate at www.givealittle.co.nz/cause/lifechanging4jack