“It’s pretty mad but all we can simply do is just say thank you. It just means a lot.”
Rett syndrome is a rare genetic neurological disorder that primarily affects girls, impacting their ability to walk, talk, eat, sleep, breathe, and use their hands.
The lifelong disorder typically presents in the first 6 to 18 months of age.
The family last year set up a Givealittle page to raise funds for three-week intensive therapy programmes at the Centre of Movement – which opens in Rotorua in July – to help Remi master essential motor skills such as rolling, sitting, crawling, and walking.
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They have been attending programmes in Australia, which were costing up to $20,000 for each trip including flights and accommodation.
Remi Henderson, 2, and Mandy Henderson. Photo / Jack Bouvier
So, Henderson and his friends – the Clubroom director Hayden Beard and Four Seasons Indoor Golf owner Matt Blackbourn – planned a 24-hour golf fundraiser on May 23 to 24 to help raise funds for Remi’s therapy.
While he was still working out exact numbers, Henderson said the trio scored about 260 birdies (one under par) and about $15,000 from businesses that sponsored each hole.
As of May 29, the Givealittle page had reached about $23,455 and auction items – including former Black Cap Neil Wagner’s test shirt signed by the entire cricket team and a round of golf with Kiwi golfer Daniel Hillier at the exclusive Te Arai Links golf club – were set at about $13,000.
“We’ve probably raised enough to pay for Remi’s treatment for the next three years and that is amazing,” Henderson said.
“That is a massive game-changer for us and gives us some runway into the future.”
He summed up the 24 hours of golf as a “complete whirlwind and a blur”.
“I take myself back to when we made the last putt on hole 18 of the 24th hour for an Eagle [two under par], to finish 20-under par for the last round, and saw just how locked in we were and having fun.
“That summed it up for me.
Former Black Cap Neil Wagner and the Clubroom director Hayden Beard at the event. Photo / Jack Bouvier
“All the energy in the room and every person’s little bit of effort from start to finish to help Remi and us raise some funds to make this event a success just culminated in that last hour.”
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Henderson said there was only a 45-minute window when it was just the three golfers, and it felt overall like they had constant support.
He said the mental and physical struggle hit between 6am and 8am. He felt “quite sick” and wondered if he could keep going, but a walk in the fresh air was enough to get him back in the game.
Remi is all smiles during her therapy. Photo / Supplied
Henderson said the past few weeks have been a “massive emotional ride” but being Remi’s dad had taught him it was okay to be emotional.
“At the end of the 24 hours, I just ran with the feeling at the time.
“To let it out after physically and emotionally going through some tough stuff, but to be around some really cool people and feel safe to let go in that moment was pretty incredible.”
Blackbourn said the ultimate goal of raising funds for Remi helped him push through the 24 hours.
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“It was such an epic thing we did and something I’ll always remember.”
Beard, a professional golfer, said seeing Remi at the end was quite emotional.
“I’ve never played that much golf consecutively in my life, but seeing how strong Remi is, is what kept us going.”
Remi’s mum Mandy Henderson was still lost for words but thanked everyone who supported the event, sent messages and made donations.
Matt Henderson and his daughter Remi, two, at the ‘Birdies for Remi’ 24-hour golf fundraiser. Photo and video / Jack Bouvier
“Remi is our baby and obviously we would do anything for her, but to see so many other people step up and have her back too was amazing,” she said.
“We felt the aroha and the support of the community rallying around us.”
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To donate to Remi’s cause, visit givealittle.co.nz/cause/help-remi-stand-one-birdy-at-a-time or visit the auctions at www.32auctions.com/birdies-for-remi
A gala dinner is also planned during Rett Syndrome Awareness month in October.
– Content supplied by freelance journalist Zoe Hunter, who co-owns the Clubroom with husband Hayden Beard.
