A 24-hour indoor golf fundraiser on May 23 will help raise funds and awareness for Remi Henderson who suffers from Rhett Syndrome.
Remi Henderson, 2, has a rare and lifelong neurological disorder that has stolen her ability to walk and talk. The Tauranga toddler started making huge progress after a series of three-week intensive physical therapy sessions in Australia, each costing up to $10,000. Her family fears that if they can’t continue regular intensive therapy, it will undo all of Remi’s progress.
Remi Henderson loves music and The Wiggles just like any other 2-year-old girl.
But behind her bright eyes and infectious smile is a daily struggle.
Remi has Rett syndrome – a rare genetic neurological disorder that primarily affects girls, impacting the ability to walk, talk, eat, sleep, breathe, and use their hands. The lifelong disorder typically presents between ages 6 and 18 months.
For Remi’s parents, Mandy and Matt Henderson, every small milestone – like sitting unassisted or a squeeze of her hand – speaks volumes.
“Retts affects pretty much every system in the body. It’s like a processing disorder. The brain is functioning fine, but it isn’t able to get the messages to the rest of the body,” Matt said.
“Imagine a child with symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety all in one person.”
Remi was born in June 2022, happy and healthy. But as she grew, her parents noticed she was not hitting the usual movement milestones.
“I hoped I would go to the doctor and she would say, ‘You’re right, she’s behind, but she’s going to be fine’. But she didn’t say that.”
The diagnosis came in November, after two years of neurological testing.
In that time, Remi had begun losing the ability to feed herself or roll and sit up unassisted.
”It’s devastating to see her go backwards.”
Rett syndrome is caused by a gene mutation, and Mandy said neuroscientists were making progress towards a cure.
“I am so hopeful there’s going to be a treatment in Remi’s lifetime that will at least help to improve her function somewhat and make life that little bit easier for her.”
Remi is all smiles during her therapy. Photo / Supplied
The couple described Remi as a happy, giggly girl who adores music and people, and is always eager to connect.
Remi is the younger sibling to brother Bodhi, 8, and sister Willa, 6.
“They just see her for who she is.”
Matt and Mandy’s dream is for Remi to be able to stand on her own. They say intensive therapy is their best chance.
“If I had the ability to, I would absolutely change everything for Remi. But not who she is,” Matt said.
“I would at least give her a body she could use.”
Centre of Movement is a paediatric allied health clinic in Australia specialising in neurological disorders.
The family last year set up a Givealittle page to raise funds for Remi to do the centre’s three-week intensive therapy programmes to master essential motor skills such as rolling, sitting, crawling, and walking.
Each session costs up to $10,000, plus travel costs.
The goal was to go every few months, but they could not afford it and feared without it, Remi’s progress would reverse, Mandy said.
Each programme will still cost about the same - $180 per session and a minimum of 45 sessions in the three weeks.
Mandy, a former speech therapist for children with neurological developmental conditions at Starship, will take up a role at the new clinic.
She said the regular therapy sessions Remi did in Tauranga were “amazing” but the family had seen the most progress from the intensive therapy, which was not funded in New Zealand.
Matt said a moment had demonstrated how “crucial” these sessions were for Remi.
“The other day, Remi was sitting on the couch propped up on a bunch of pillows when she was about to fall - and she put her hand down and stopped herself.”
The Hendersons: Matt and Mandy with their children baby Remi, Bodhi, and Willa. Photo / Supplied
Centre of Movement director Emily Pennisi said “hundreds” of New Zealand families had travelled overseas to access intensive therapy.
“When children are supported early, they’re more likely to participate in school, play, and in their community.”
Pennisi said the clinic wanted to make intensive therapy more accessible to New Zealanders by opening more clinics, training local therapists, and supporting early intervention.
Matt is planning a 24-hour golf fundraiser at Fore Seasons Indoor Golf on May 23 to help raise funds for Remi’s therapy.
He and his friends – Fore Seasons Indoor Golf owner Matt Blackbourn and The Clubroom Tauranga director Hayden Beard – will play 24 rounds of indoor golf in 24 hours.
The trio aims to play 432 holes and will be joined by sporting celebrity guests to help make “Birdies for Remi”, with money donated for every birdie (one under par) made.
They will also auction off prizes including former Black Cap Neil Wagner’s test shirt signed by the cricket team and a round of golf with Kiwi golfer Daniel Hillier at Te Arai Links.
A gala dinner is also planned during Rett Syndrome Awareness month in October.
“Our priority is trying to get as much development out of her now in these early years as we can,” Matt said.
“Eventually, we’re going to need a wheelchair, which means we need to make our car and home wheelchair accessible. Everything adds up.”
