Hayden Midwood (right) with his partner Tahlia Joyce and their children Arlo, 1, Oakley, 5, and Ivar, 10 months.
Tokoroa father of three Hayden Midwood is having to sell his home to pay for a life-saving medical procedure.
The 24-year-old has been diagnosed with a rare brain condition, an arteriovenous malformation - AVM for short - which is a tangle of blood vessels connecting arteries and veins in the brain.
If left untreated, it could cause brain bleeding, brain damage, or a stroke.
“I was told I could end up being paralysed and in a wheelchair within five to 10 years if nothing is done about it.”
Midwood is a self-described adrenalin junkie who loves to be active with his kids, riding dirt bikes and hunting - all things he had to give up after the diagnosis.
It started last year when the engineer at Kinleith Mill noticed something was wrong while he was at work.
“I suddenly lost all feeling in my left leg. Then the numbness started travelling through the whole left side of my body. It freaked me out. I didn’t tell anyone and just hid in the toilet until it went away,” Midwood said.
He went to Tokoroa Hospital where an X-ray was done but everything looked fine.
His partner Tahlia Joyce, 25, said she initially didn’t believe it was anything major and put it down to stress.
Midwood said the numbness reoccurred on several occasions and he thought he was having mild strokes, but no cause could be found. Then, in January this year he had a seizure in his sleep.
”I woke up and rang Tahlia four times asking her the same question ... I couldn’t remember anything the next morning, not even if I had gone to work.
“I woke up with all these bruises on my back and there was blood down the hallway. I ... must have fallen out of bed.”
Following the incident, Midwood went for an MRI and EEG in Hamilton.
“Something showed up in the MRI. The technician wouldn’t tell me what it was, but based on their reaction I could tell something was wrong.
“A doctor then told me that it was an AVM ... But said that there is nothing they can do about it in New Zealand.”
Midwood said the diagnosis was partly a relief.
“I know my body, I knew something wasn’t right, it was just that no one else really believed me. Getting the diagnosis confirmed that I was right all along.
“But it was also depressing. I thought that I was gonna die from [the AVM] and I get anxiety, constantly wondering if it has hemorrhaged.”
Joyce said the AVM also affected Midwood’s parenting of Arlo, 1, Oakley, 5, and Ivar, 10 months.
“He’s so active with our kids and such a good dad. But at the moment, they aren’t getting the best version of their dad. I mean I know and understand why, but they don’t.”
They found a doctor in Virginia, USA - Dr Jason Sheehan - who specialises in brain tumors and would be able to remove the AVM through a procedure called Gamma Knife Radiosurgery.
“[Sheehan] said he would be happy to treat me and said there is a 95 per cent chance of [the procedure] being successful. If it is, I can go back to my normal life. But [the radiosurgery] costs NZ$106,000 - and that’s only the procedure, without accommodation and food,” Midwood said.
But until he has the funds, he won’t be able to make an appointment.
Midwood said he had health insurance, but because his condition was an “abnormality” and not a disease, the insurance wouldn’t contribute to the costs of the procedure.
The only option was to sell his house.
“I worked since I was 17, I always had a job. Out of all my friends in high school, I was the only one who wanted to buy a house. And I did it, I bought it when I was 21.”
Selling the house won’t be enough to cover all the costs so Midwood has also applied for funding from the Government’s High-Cost Treatment Pool and Joyce has started a Givealittle page for him.
Joyce said it was scary to see her partner so vulnerable, but she was trying not to lose hope.
“I need this treatment for the kids to have their father ... We always had lots of blessings. We bought a house, he has a good job, we have three amazing kids. But it always went up and down.
“Hayden’s mum was diagnosed with cancer, but we were able to buy a house. My dad died, but then I found out I was pregnant. There has always been a good to the bad, so I’m just like ‘Where is our silver lining?’ I know there has to be something.”
Midwood said he, too, kept his eyes firmly on the goal.
“My kids make me want to keep going. I want to be there for them.”
Danielle Zollickhofer is a multimedia journalist based in Hamilton. She joined NZME in 2021 and is writing for the Waikato Herald.
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