It is painful to watch Altona Meadows boy Nathan Visser struggling to breathe through a hole in his neck.
Nathan ‘the lionheart’ Visser, a 12-year-old student at Warringa Park School at Hoppers Crossing, is one of about 60 people in Australia with Charge syndrome.
Getting to school has become an ordeal as Nathan grows, with his mother, Maureen, turning to crowdfunding to raise $30,000 towards the cost of a wheelchair conversion to get him into a car.
Nathan, who was not expected to survive more than a few days after birth, has severe heart and lung problems. He can’t go anywhere without his oxygen tank, is fed through a peg in his stomach and has a host of other medical problems.
He has only half a heart – but it’s a big one, Ms Visser says.
A sole parent since her husband suddenly died when Nathan was 13 months old, Ms Visser said her son’s care became even more demanding after a recent throat scope procedure wrecked his airways.
“Now he has a tracheotomy, which is 24/7 care, so you can’t leave him out of your sight for one second because you have to suction him all the time.
“You have to watch that he doesn’t pull it out because if he pulls it out he’ll die because he’s got nowhere to breathe.”
Halfway through our interview, Ms Visser has to stop to suction fluid from her little boy’s neck.
The total cost of a wheelchair conversion and car – under government legislation a conversion has to be done on a new car – is $71,000.
The Rotary Club of Altona has taken up the cause to raise the final $30,000. Its ‘5:6 campaign’, calls for 6000 people to donate $5.
“He’s getting bigger now and my car is not able to carry his wheelchair,” Ms Visser said.
“I’m lifting him in and out of the car at the moment. I’ve got a pram that I use in the car as I can’t put the wheelchair in, but he’s now outgrowing that so we have to get a wheelchair.
“And I’m not getting a full conversion.
“If I’d done a full conversion it would have been nearly $60,000. And the government only gives us $10,000.
“It makes it hard; everything is so far out of reach.”
For more information, visit Nathan’s crowdfunding site at bit.ly/1vOmY0i
