On Saturday, Kerryn Sheen hosted a women’s second-hand clothing fundraiser at the Roslyn Wakari Football Club to help get her nephew, Cole Tudehope, 4, over to Brisbane to be treated by specialist doctors.
"He has a really rare genetic disorder called Witteveen-Kolk syndrome which is only relatively newly discovered.
"When he was born, he was the only child in New Zealand that had it.
"Cole is 4, he is non-verbal and he can’t walk, and he had a feeding tube," Kerryn said.
Witteveen-Kolk syndrome is a rare genetic condition that causes developmental delay and each person is affected differently.
It is caused by changes or deletion of a one of the two copies of a gene called SIN3A.
The chance of a child being born with the condition was one in a million.
"It’s all donations from people’s wardrobes — it’s just an amazing response from the community."
The club hall was packed early in the morning with people rummaging for clothing, and Kerryn and her sister Anna Sheen were overwhelmed with people’s kindness.
Anna, Cole’s mum, said Witteveen-Kolk syndrome was only discovered in 2016 and her son was the first child to be diagnosed with the condition in New Zealand.
"Nobody really knows what his prognosis is ... his team said Cole will be what he will be and we’ve just got to help his to be the best he can be.
"He’s such a happy boy most of the time, but there are frustrations ... he can’t speak and he can’t walk — he can eat some food orally but most has to go through a tube in his stomach."
The hope is to get Cole to Brisbane to go to the Napa Centre, a specialised paediatric therapy clinic, next March to receive treatment that is not available in New Zealand.
Anna said they wanted to wean him off the feeding tube and work on his mouth stimulation at the clinic to get him eating completely solid food.
The course would last three weeks and the costs to get Anna, her husband and Cole with his support equipment to Brisbane as well as feed and house them would be in the $20,000 to $30,000 range.
When Cole was born in 2020, New Zealand was going into level-four lockdown during the Covid-19 pandemic and Cole was spending three weeks in the Nicu.
Throughout the 2020 lockdown, Cole was admitted to hospital 19 times, had 80 specialist visits and his care spanned 11 different hospital departments — all while juggling moving Covid-19 level situations.
He has had a number of operations including skull surgery in Wellington.
From the very little known about Cole’s condition, it was thought he might be on the more severe end of the spectrum compared with other children with Witteveen-Kolk syndrome.
"Each year he has he’s progressed in some respects, but there’s still a lot to do," Anna said.
"He’s just really happy kid with the most amazing giggles ... he’s trying to communicate with us in ways he knows he can."
A Givealittle has been set up to help get Cole over to Australia.
