Family want to make Toby's Matthews big dreams come true after he was diagnosed with Usher syndrome

Toby Matthews has always had big dreams - he wants to be a firefighter, or a builder like his dad.

But his dreams may now be impossible.

Toby is deaf, and learned last year that he is also going blind.

He has Usher syndrome, a very rare and incurable genetic condition. He was born deaf, but now his vision is tunnelling, so the area he can see is slowly getting smaller.

His parents, Logan and Meg Matthews, said they had no idea what the condition was when they were called by a doctor last year, and told their son was going blind.

"We were told to Google it," Mr Matthews said.

Because it is so rare, they did not know how long Toby's vision might last.

"There is no time frame, no answers, no way to fix it. Which I think is the hardest thing, not knowing how it is going to end, or when," he said.

They are now trying to fill Toby's life with as many experiences as possible, before his world goes dark.

In May, Mr Matthews plans to take Toby to Africa, to spend two weeks helping to build a school for children in Zimbabwe.

"We thought it would be a great opportunity for Toby, while he's got some vision, to go overseas and do that exploring that most of us do when we're older and take for granted," he said.

Toby Matthews wanted to be a builder like his father. Photo / Geoff Sloan, Christchurch Star

Toby has his heart set on seeing a tiger - and although they are unlikely to find tigers in Zimbabwe, Mr Matthews said they planned to go on a safari to see the wildlife, and visit places such as Victoria Falls.

They are also trying to teach him ways to cope as he gradually loses his vision.

Toby already knows sign language, but they are teaching him finger spelling - and he was already begging for a guide dog, Mr Matthews said.

But he said going out at night could be terrifying for Toby, as he had lost night vision, and navigating was becoming frustrating.

"He comes home most days with cuts or bruises, because he's walked into a pole or
tripped over something," he said.

He said the hardest part was hearing Toby talk about his big dreams for the future, and not knowing what to tell him.

"As his vision gets worse you realise those dreams he has, he won't be able to do."

•Friends have set up a Givealittle page for Toby, to help pay for his trip to Zimbabwe. It can be found at www.givealittle.co.nz/cause/tobymatthews