Mahia and Tipene Mahia and Tipene Stephens were born with the congenital eye disorder, Rod-cone Dystrophy, a condition that is causing their eyesight to deteriorate rapidly.
“6/6 is perfect vision, 6/60 is legally blind.” says Lane, “Mahia is 6/72. You’d get a bit of an idea of his vision if you looked through toilet rolls and put bubble wrap over the top.”
At first, the diagnosis of the boys were hard to come to terms with as Lane thought of all the experiences they would miss out on. But as they grow into young men, she is determined to foster their independence by teaching them important life skills and encouraging them to give everything a go.
“I wish I had millions of dollars and I could take them around the world and give them visual memories.”
“I wish I had millions of dollars and I could take them around the world and give them visual memories.” says Lane.
But instead, she works hard to give them the best experiences she can while they still have their sight.
“I don’t have to own lots of stuff and have a big flash house and car. I’ve got amazing children… that’s what’s important.”
From acting classes and Jiu-Jitsu lessons, to golfing and woodworking, the boys and their siblings Tia and Kaea try anything at least once.
Knowing Mahia would likely not get the opportunity to drive in his adult life, Lane has him drive go-karts to experience driving while it was still possible.
He takes on any new situation with gusto just like any other seven-year-old boy and track owner, Shawn modifies it to keep giving him a challenge.
“He memorises the track and he could drive it without seeing, so I change it” he says.
Both Mahia and Tipene do jujitsu as another outlet for their energy, but more importantly, Lane sees it as an opportunity to be a part of an awesome club, “a whanau outside of their own whanau.”
Mahia also takes piano lessons, “he might find it a little bit difficult to have structured lessons but once he’s got it he’s got it. Music is just in his being.” says Lane.
At 6/24, Tipene’s vision is better than Mahia’s but knows it will decrease over time. But that doesn’t stop him being a fiercely loyal young man.
“I wish for all of my children to be really happy in their adult life and I think with happiness is with connections and relationships.