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Billionaire's family backs Friedreich's Ataxia research fundraiser for friend Flynn Mitchell
Billionaire's family backs Friedreich's Ataxia research fundraiser for friend Flynn Mitchell

NZ Herald

time24-05-2025

  • Health
  • NZ Herald

Billionaire's family backs Friedreich's Ataxia research fundraiser for friend Flynn Mitchell

As he tried to get into the house, his wheelchair kept sliding backwards. With no one expected home for another four hours, Mitchell was left stranded in the cold. 'There was no way I could get up there. It would've been dangerous [but] if I'd stayed outside I would have frozen to death,' Mitchell said. 'I finally managed to open the door but couldn't get the wheelchair in, so I crawled into the house and pulled the wheelchair behind me. When I got in, I was freezing. I broke down and I bawled my eyes out. I thought, 'I can't do this anymore.'' Fundraising for a cure Mitchell, who graduated last week with a Bachelor of Entrepreneurship from Otago University, has Friedreich's Ataxia (FA)- a progressive, incurable neurodegenerative muscular disorder. There is currently no cure, and billionaire Graeme Hart's granddaughter Jemima Hawkesby, 21, is one of a group of Mitchell's closest friends raising awareness and funds for research into the disorder. They have a team, 'For Flynn,' in the Lend Us Some Muscl e campaign - to raise funds for future research and clinical trials. 'We are a group of mates in our early 20's from all over New Zealand, taking on the Lend Us Some Muscle Global Challenge 2025 for the second year running' says the blurb introducing their fundraiser. 'Flynn's one of the strongest, most determined people we know, and this is our way of backing him, and showing him how proud we are of his strength.' Hawkesby told the Herald, 'We want to help Flynn walk again. Each team will complete physical challenges like walking, running, golfing, swimming, and yoga- sadly all activities that Flynn and others with FA can no longer do.' So far, the friends have raised more than $16,500 of their $30,000 target. 'My friends keep me grounded.' Hawkesby and Mitchell boarded at Selwyn College, Otago in 2022 and instantly clicked, Mitchell confiding in her about why he chose to be in a wheelchair. Says Hawkesby: 'He got tired of people harassing him and taking the piss out of the way he walked. He knew he would end up in a wheelchair and thought, 'why wait'? It gets to me when my friends say, 'we're going on a hike' and obviously I can't go. Flynn Mitchell 'He was like a fourth brother to me. Flynny is one of us - we forget he's in a wheelchair. He shows up for everyone no matter what he's going through' Hawkesby said. 'I've had to take him to hospital a few times because he's been drunk and fallen out of his chair and banged his head. He doesn't like asking for help, but he always takes time to check in on me every day.' Mitchell says being around close, non-judgemental friends keeps him grounded. 'When I started walking funny, before I got a wheelchair, quite a few friends dropped off.' But his genuine friends stood by him - 'friends like Jemima, Jules and Xavier, my childhood friend from King's College.' I'd love to be a father one day. I'd like to be able to talk properly and be able to dance on two feet and walk without having to rely on my friends to lift me upstairs. Flynn Mitchell Hawkesby - public relations leader for Antipodes - now lives in Wellington with her partner Jesse Tashkoff, an all-rounder for the Wellington Firebirds. The pair caught up with Mitchell in Dunedin last week, when Hawkesby graduated with a Bachelor of Commerce and Mitchell with a Bachelor of Entrepreneurship. Hawkesby's grandmother, 'Mama' Robyn Hart - wife of Graeme Hart - has donated to the campaign and told the Herald Mitchell is much-loved by his friends. 'I admire him and his 'can do' attitude. One day he came to see me at home and announced there was going to be a drug that could reverse many of his FA symptoms. The look of hope on his face and the tears in his eyes as he told us was so special.' Hart told the Herald her fondest memory of Mitchell was at her granddaughter's 19th birthday. 'Drinking shots with Flynn in Dunedin - he out-drank me! That's not an easy thing to do' Hart said. One of Mitchell's university friends, Jules Aitken, 21, accompanied him to Melbourne last year for annual tests, treatments and monitoring. 'You never truly understand how much FA affects Flynn's daily life until you see it. I got a real insight being with him 24/7. Flynn will never talk about it or complain but you see how much more difficult it is for him.' 'For the Lend Us Some Muscle campaign we're trying to cover the length of NZ which is 1600 kilometers from the top to the bottom which is 8.6 kms a day. What motivates me is if my legs and feet are sore and I'm in pain and I don't feel like a run, I think how privileged I am to be able to exercise and raise money for my mate who would cherish the opportunity to go for a run.' The rare condition Friedreich's Ataxia is a life-shortening, progressive neuro-muscular disorder, and there isn't a cure yet. Mitchell's heart is fragile; he has lost co-ordination and the ability to walk, and talk clearly. It's the simple things he grieves the most. 'I used to be fully independent. I sailed, I could walk to the beach, play football in the park. It gets to me when my friends say, 'we're going on a hike' and obviously I can't go.' In New Zealand, as many as 1 in 90 people may be carriers of the gene. The diagnosis Mitchell grew up in St Heliers, Auckland, with his parents, Scott and Gesa, and his two younger brothers, Peer,19 and Yonas, 18. Gesa says when she first learned of her son's diagnosis, she couldn't breathe. 'It is hereditary, but we don't know anyone in our families who has it,' she told the Herald. 'It was quite a process for Flynn to be diagnosed. When he was 12, I noticed he was skinnier and shorter than the other boys, but I wasn't worried. Then he started losing his balance, and after he did the Ironman in 2013, he was struggling to breathe big-time. That was the first sign of hypertrophic cardiomyopathy which is part of FA.' Gesa describes her son as clever, kind curious, with a big smile on his face - a lover of marine life. She said it was devastating to see him unable to do the things he loves most: run, cycle, sail, ski and hike. 'You have to think outside the box. Last year, we took Flynn to the Sahara Desert,he didn't want to ride on a camel because it wasn't sustainable or 'the right thing for the camel,' so we put his wheelchair on the back of quad bike because Flynn didn't think it was ethical putting a wheelchair on top of a camel.' Mitchell hopes to finish his master's next February and start a business protecting the natural world and being amongst animals like his hero, Sir David Attenborough. He wants to fall in love and have his own family. 'I'd love to be a father one day. I'd like to be able to talk properly and be able to dance on two feet and walk without having to rely on my friends to lift me upstairs. 'I would love not to rely on anyone.' Carolyne Meng-Yee is an Auckland-based investigative journalist who won Best Documentary at the Voyager Media Awards in 2022. She worked for the Herald on Sunday from 2007-2011 and rejoined the Herald in 2016 after working as an award-winning current affairs producer at TVNZ's 60 Minutes, 20/20 and Sunday.

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