Myles MacDuff hopes an upcoming rugby game named in his honour will raise awareness of motor neuron disease.
The former Hauraki North and Thames Valley loose forward was diagnosed with motor neuron disease (MND) in November last year, more than a decade after a life-changing injury.
Myles, who grew up in Kerepēhi, said the head injury he suffered during a game with Hauraki North in Te Aroha in 2009 could have caused his diagnosis.
“I had a massive head knock… and split my head open,” he said.
His wife, Helen, said Myles had a hematoma on the top of his head and his speech was slurred after the knock to the head.
“There was a locum on duty in Te Aroha so all he did was look at Myles and just bandage him up and then sent him home,” she said.
“The next day he rang around Ngātea to find us again just to check in because [Myles] probably should’ve just gone to hospital, but he never did… we just carried on thinking he’d get better but he didn’t really.”
Myles, who had previously also played for Whangamatā, Hamilton, Yorkshire and Welsh clubs, said he faced a “snowball” of health issues in the years following the head injury, before finally receiving a diagnosis.
“Two years prior to being diagnosed, I started suffering massively from fatigue… I couldn’t do anything on the weekends, and then weight gain happened and then little accidents at work… It was just a snowball,” he said.
“Then I got depression, my arms started twitching mid last year, so I went to the doctor. Because I had a neck injury compressing all my vertebrae, they were leaning on the fact I had a pinched nerve or done something there.
“I did MRIs but in the meantime I started losing strength in my hand… and when the GP learned I was losing strength, straight away I could see it then, he knew.”
Myles was then sent to a neurologist for further tests where his MND diagnosis was confirmed.
Helen said she and Myles, who were living in Te Puke at the time with their children, Greer and William, “were in shock”.
“We drove home, the kids were at school and we just sat there like stunned mullets,” she said.
“The neurologist gave us some stats and said by the time of diagnosis, statistically 50 per cent make it to 18 months.
“So we don’t know the timeframe, we don’t know how long [Myles] has… we hope for the best.”
Myles said he announced his diagnosis on Facebook so he could “be open right from the start”, and his family moved back to Ngātea in January to be with extended family and their community.
A #4miles4myles campaign was soon established where competitors would walk, run or cycle for four miles to raise funds for Myles.
“A lot of people around Wales got involved… [Springboks captain] Siya Kolisi, [former Wales coach] Warren Gatland and half the Welsh team were doing videos fundraising for me, it was pretty full on,” Myles said.
“We decided to go to Wales and see [old rugby mates] for our holiday so we caught up with them and they had a big fundraising night for us… it was pretty overwhelming, it was great.”
Helen said Ngātea Primary School also took part in the #4miles4myles fundraiser, along with a Long Arms Challenge fundraiser, which involved physical activity.
Myles was then contacted by Hauraki North club captain Andrew Williams who together with Thames Valley Swampfoxes coach David Harrison offered to host a rugby game to raise funds to support Myles and raise awareness for MND.
The event, which kicks off on July 23, includes matches between Hauraki North and Thames Valley with players from both teams invited by Myles, plus a curtain raiser between the Swampfoxes and North Harbour B.
“I love the fact that all of my old mates are coming back together… almost all of them are guys I’ve had to do with through my rugby career,” Myles said.
“I’ve got two Welsh guys staying with me at the moment from Fishguard, [Wales], they’ve come over for the game and [for them] to play in this game means a lot.”
Helen said all donations from the rugby event, the Long Arms Challenge and #4miles4myles fundraisers would help fund their kids’ education, specialised equipment to support Myles and help her support Myles full time.
“Because motor neuron shuts down everything physically, he won’t be able to move at all and speak,” she said.
“Even though he’s okay at the moment, it’s always: when is that time I’ll need to be here all the time… so any funds we can get will help.”
Myles said while MND New Zealand supported some equipment costs, more government support was needed to support those with MND and also to research for a cure.
“We went to social welfare and we said if Helen looks after me full time, what do we get and for us, a family of four would have to live on $700 per week, which wouldn’t be enough.
“I just don’t know how some families live with this diagnosis.”
DETAILS: Hauraki North RFC, Waitakaruru, July 23: Swampfoxes vs North Harbour B, 12:30pm, Hauraki North Invitational XV vs Thames Valley Invitational XV, 2:30pm. Jersey and general auction, 6pm. Donations for Myles: givealittle.co.nz/cause/myles-macduff-mnd-awareness.
