A year ago, Dixon Cribb asked his friend Jacob Grimm if he would grow out his mullet with him to raise money for Epilepsy New Zealand.
Dixon died due to complications from the incredibly rare Dravet Syndrome in September, and last week Jacob was in the Ebony & Ivory Salon cutting his hair in the boy’s memory.
Dixon’s cousin Davina Pope was also making the chop for Dixon, donating her 40cm locks to charitable wig provider Freedom Wigs and raising funds for epilepsy.
Elisha Bangma, Dixon’s mother, became emotional during Jacob’s haircut.
She said she found it hard that her boy, who was so excited to grow and cut his long ginger mullet, was not there.
He had shaved his head several times for medical procedures when he was little, and when he died his hair was 35cm — 0.5cm under the limit to donate.
His mother said he was a "kind soul" and, at the cognitive age of 2, loved to give back and share with the community.
"He lived on-and-off in hospital, so he learned how to help," Ms Bangma said.
His former teacher aide Emma Phillips said the boy always insisted on a class dance party at various times during a school day, particularly if he had a new disco light to try out.
Both women, along with Dixon’s friends and family were present at the Gore salon for the haircutting ceremony.
Ms Bangma’s two other children also have Dravet Syndrome, which she said affects only about 100 people in the world.
"It’s the rarest one that’s known right now."
Because of this, she had become an expert in dealing with the disease, both medically and financially.
Carers for children with epilepsy were not publicly funded, like they were for autism, and life insurance was difficult to get, with sky-high premiums.
That was why Ms Bangma and Mrs Borthwick were looking into building different initiatives to raise money and awareness for epilepsy.
They have set up a crowdfunding page to raise money to start a foundation in Dixon’s name, as well as one to sponsor Jacob and Davina’s haircuts for Epilepsy NZ.
"Things are in the works for supporting kids like Dixon in future," Ms Bangma said.
