Three-year-old Waipawa boy Grayson Jane has been diagnosed with Lesch–Nyhan syndrome, a rare genetic disorder that almost exclusively affects boys. Photo / Supplied
Three-year-old Waipawa boy Grayson Jane has been diagnosed with Lesch–Nyhan syndrome, a rare genetic disorder that almost exclusively affects boys. Photo / Supplied
Grayson Jane has good and bad days.
The Waipawa toddler’s good days are filled with trucks, trikes and happiness.
On his bad days, he bites his hands to a bloody mess.
Grayson, 3, was diagnosed withLesch-Nyhan Syndrome (LNS) in November 2025.
It’s an incurable condition that causes physicaland mental disabilities and can bring on self-mutilating behaviours.
“Usually, it’s a whole day of me just holding him and stopping him from hurting himself.”
Waipawa boy Grayson Jane, pictured with his mum Amber Jane. Photo / Supplied
On Wednesday, Grayson had all of his teeth surgically removed to stop the biting.
A Health New Zealand spokeswoman said Lesch–Nyhan syndrome is a rare genetic disorder that almost exclusively affects boys.
“It is inherited from the mother through an X-linked recessive pattern.”
She said since early infancy, Grayson has had a large number of local and national clinicians and specialists actively involved in his care.
“At this time, he has a team supporting his care that includes a physiotherapist, occupational therapist, dietitian, paediatrician, dental surgeon, ophthalmologist, audiologist, social worker, paediatric neurologist, paediatric metabolic physician, geneticist and paediatric surgeon.”
Amber Jane said her son had recently had his teeth removed to prevent the uncontrollable biting.
Amber said her son’s rare condition had changed the family of four’s lives dramatically, and they now live with an uncertain life expectancy for their son and brother.
“It’s a huge shock to the system, as you can imagine, kind of turned our world upside down.
“He could go anytime ... we are trying not to plan too far ahead.”
She said she initially noticed something wasn’t right around the age of 6 months.
Grayson had missed key developmental milestones, had stiff arms and would throw them behind his back.
Amber said this was something she was hyper-aware of looking out for as her older daughter, Meila, aged 13, also has a genetic disorder, known as TCF 20.
“She also didn’t meet her milestones, so I kind of knew what to look for.
“As soon as he started hitting 6 months and should have been sitting up and reaching for toys and things like that ... I took him to the doctor with my own back-pocket research.”
At the age of 8 months, Grayson had an MRI, which signalled unusual patterns of blood in his brain.
Amber said after genetic testing of herself, husband Steven Jane and Grayson, they were put on a path to get answers.
“It’s been a long journey, and it’s been a lot of stress and tears and a lot to take on board.
“It comes from the mother. That was a pretty hard pill to swallow.”
She said they have now put measures in place to protect him.
“He thrashes a lot, he throws his head forward a lot, and if he doesn’t have his neck collar ... if he doesn’t have that one while he is upright, he will throw his head forward.”
She said they had put covers on his hands and braces on his arms, so he was unable to bend his arms to bite them.
“I really grieve a life for him that he is never going to have.”
Amber said the community had been a great support after a friend started a Givealittle page.
“We have done things on our own for so long, we have just dealt with it and then for all these people – some people we don’t even know – that have come and wanted to support us and help out.”
Michaela Gower joined Hawke’s Bay Today in 2023 and is based out of the Hastings newsroom. She covers Dannevirke and Hawke’s Bay news and loves sharing stories about farming and rural communities.
