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 tunneling 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.
Shortly in May Mr Matthews is taking 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 it for granted," he said.
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 is already begging for a guide dog, Mr Matthews said.
"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.
Toby is a lively chap and wants to head to Africa to help his dad build a school for children in Zimbabwe. Let's see if we can help get him there folks. https://givealittle.co.nz/cause/tobymatthews
Reprinted courtesy of The Star.
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