He is just two and a half years old and already a veteran of three rounds of surgery to save his sight. He is also the inspiration behind a new charity launched in Katoomba last week.
Nik Schack-Evans suffers from Duane Syndrome, a rare form of eye misalignment that affects about 5 per cent of children born in Australia. The nerves that control the muscles around the eyeball are either absent or not fully developed.
In Nik’s case, the muscles that moved his eyeball outwards didn’t activate, leaving his left eye rolling inwards towards his nose.
A community nurse first noticed Nik’s eyes when he was about four months old. His parents — Katoomba police inspector Ken and Blue Mountains hospital nurse Lisa — immediately took him to an ophthalmologist who confirmed the diagnosis.
The Schack-Evanses began putting patches on Nik for a few hours each day, alternating one eye at a time, to encourage his brain to actually use both eyes. But the toddler’s vision remained blurry and he found it difficult to walk properly.
Before he was two he underwent an operation which adjusted the length of a muscle to hold the eyeball in place so at last both eyes saw the same thing.
The results, said Mrs Schack-Evans, were “amazing” and they watched with joy as Nik walked and interacted with his world in a way he couldn’t before.
“For a wonderful week we had a little boy with a new lease on life,” she said. “It was an incredible feeling to see your beloved child blossom in such a wonderful way.”
But the result was temporary.
“Before our devastated eyes his left eye began to drift upwards and inwards and Nik’s world once again began to close in,” Mrs Schack-Evans said. “Our little boy, always a fighter, lost the confidence which had so suddenly come with the ability to see.”
The only option was surgery at Boston Children’s Hospital where Nik had two operations last September, with Botox injected into the muscle to relax it. Just last week their local doctor told the Schack-Evanses that the effects are wearing off but they can’t get such treatment in Australia because of a ban on using Botox on children.
Their best course now is a return to the patching regime to strengthen his sight.
“The danger is if we do nothing, the brain switches off,” said Inspector Schack-Evans. “It risks him going blind in the left eye.”
The family’s battle galvanised friends and colleagues to establish Niks Vision, a charity which will offer financial and emotional support to those affected by Duane Syndrome.
Donations can be made to a Westpac bank account, BSB 032828, account number 268070. Inquiries at email@example.com.