OPINION: We sat in a field of wild daisies. Bright white and yellow against a backdrop of long lush green grass.
It was glorious on a spring day in Hastings. But Rana Brown couldn't see or appreciate any of it. She's legally blind - diagnosed with an inherited retinal disease with a rare gene mutation.
"Leber congenital amaurosis RPE65 is genetic - it causes me to see the world very differently," she told Paddy Gower Has Issues. "It means I don't see any of the daises here - it's just blurry. And that's tough."
Put simply, Rana is going blind - one of just three known people in New Zealand with the rare mutation. There's no denying she is strong and resilient - determined to give her children everything and lead a "normal life", playing soccer with them in the back yard - to squeals of delight - and coaching their netball teams.
But the prognosis does take a toll. She is a solo mum, raising three young children, on her own in Hastings and going blind.
"It can cause me a lot of anxiety," she said. "There are some days where it can even set me into depression. When it comes to my kids, I gave birth to them, but I have never been able to see them for who they are, no fine detail at all. It is tough. And when people say to me, 'Your daughter is so beautiful'. I think to myself well is it true because I can't see what you see. Mentally and emotionally I've just learned to deal with it because my kids need me."
What could significantly help Rana's sight, and stop her from going completely blind, is a breakthrough gene therapy. It's called Luxturna - one injection for life.
"I will never get full sight but it will enhance the things that matter," she said.
So, without it, will she go blind?
"Yes," she replies matter-of-factly.
Is she terrified?
"It has terrified me from the moment I became a parent."
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But Luxturna isn't cheap - it's about $1.5 million to treat both eyes. Rana can't afford that or even access it. Pharmac funding and approval is needed.
"What I go through and what I have been through in my life, I wouldn't wish it on anyone. If Pharmac would help with that one little bit, it would change my whole world.
So, I asked her, "What is your message to Pharmac?"
And for the first time, Rana gets emotional. With tears in her eyes, she pauses, trying to find the words to convey what the treatment would mean to her.
"For someone like me, who does everything she can for her kids, to live a somewhat normal life and to have an opportunity to gain extra sight and to not live in fear of losing your sight would mean the absolute world to me."
Flynn Maguire feels her pain. He has the same rare gene mutation. He's a southern boy - 18, smart and stoic but slowly going blind. He just wants to be a normal teenager.
"I am legally blind, but I can still function," Maguire said from his home in old coal town Kaitangata. "It's not easy, it can get in the way of lots of things such as being a teenager and going to parties and doing normal teenage stuff. I try to have a stoic mindset about whatever happens - I can't control it but I can't let it bother me otherwise I will go insane."
It's tough for the avid reader, writer and guitar player.
"If you just look at someone with a visual disability like this, you probably can't tell, it's not a physical ailment that you can see, but it affects everything - your education, your social development, your prospects, it changes everything, it is a fundamentally different way of life."
He was just a baby when his mum Debra Young noticed something unusual.
"At a very early stage he would stare at the light or the sun and the fact he could stare at the sun I knew something was wrong because most people can't do that so that was the first warning sign", Young said.
He was finally diagnosed when he was 14.
"It's tough but we will deal with it," she said her voice breaking. "We will deal with whatever happens... sorry...". She stops the interview to compose herself.
You can see and feel the toll it's taking. They desperately want Luxturna.
"Oh, we are desperate for it, we desperately want it, desperately", she said. "It's frustrating because there is a solution to his problem, and we can see it, but we just can't reach out and grab it. It's right there in front of us".
Leading the charge to bring Luxturna to New Zealand is Auckland Ophthalmologist Andrea Vincent, Flynn and Rana's eye specialist. Vincent said the treatment is a life changer.
"These are young people who will go blind. I think it is reprehensible that we would not give treatment to someone who is going blind when there is an intervention."
She wants Pharmac to fund it but at $730,000 per eye, it's not cheap. So why is it so expensive?
"I guess this is the first in kind in a human," she said. "These things must be done so carefully, particularly when you are dealing with young people who are losing their vision fast. You want to make sure it's safe. You want to preserve their vision; you want to make it better. It's been a very long expensive road to get to that point."
And she points out, the lifetime cost of patients not getting the treatment is $5 million per person, according to an Australian study.
"If we can turn around and say this is the lifetime cost - economic, societal, health cost - of this eye disease, that's peanuts compared with it. Blindness costs our country a lot of money."
But with only three known patients, and a treatment bill costing millions of dollars - would Pharmac be better off spending that money on other cures for say, cancer patients?
"How can you decide that one person's disease is worse or more deserving of treatment than another person's?" said Dr Vincent. "This is life-changing.".
Kiwi surgeons are already trained and ready to go. They just need the funding.
"There is a window of opportunity, and the longer we wait, the poorer the outcome will be. The time is now."
Patrick Gower hosts Paddy Gower Has Issues - watch it on Three or ThreeNow.
