In rural Taranaki, on a dairy farm that looks just like any other, there is a boy playing with his dad’s tractor. Just four years old, he marvels at the giant wheels and squeals with delight when the engine starts. It’s a scene endemic to rural New Zealand, but this particular little lad, Lucas Kiser, is not like other four-year-old boys. In fact, he's very rare indeed.
“Lucas was diagnosed with Stickler Syndrome, infantile glaucoma and severe myopia when he was four months old,” says his mum Sonia, who is married to Michael and has another son, Andre, now three. “He had pressures of 38 in his right eye and 24 in his left the day we saw the ophthalmologist, and he has been as high as 48.''
Stickler Syndrome is rare but not unheard of in New Zealand. Characterised by structural problems of the eye and unusual facial features, the biggest optical risk for the patient is usually retinal detachment. However, Lucas has an especially rare version of this recessive genetic disorder that walks hand-in-hand with glaucoma and is estimated to affect just 5%-10% of people with the condition.
“He wasn’t a happy baby. The first four months were hard,” admits Sonia. “He cried a lot, rarely slept, didn’t feed well and was sensitive to light so we couldn’t go outside much.”
The family went to their GP frequently for what everyone thought was repetitive conjunctivitis, but when Michael saw the cloudy film on Lucas’ eye he decided enough was enough and they bundled Lucas off to see their local ophthalmologist, Dr Ross Neville-Lamb who referred them directly to paediatric specialist Dr Justin Mora in Auckland with suspected glaucoma.
