Napier woman Rachel Shaw watched stunned as the Government give a $72 million bailout to the racing industry.
She's got nothing personal against racing. It's just that she looks at her two children, Zayden and Skylah-Rose, and reckons that money could have been better spent.
Rachel, 31, has been hit by a "heartbreaking" double-whammy.
Both of her kids have been diagnosed with Spinal Muscular Atrophy [SMA], a rare condition that affects just 35 kids in New Zealand.
It's a debilitating disease, but in Spinraza there is a proven life-prolonging drug that is funded in 50 other countries, and experts say it would cost just $6m a year to bring it here.
But, despite the massive spend up on healthcare and economic stimulants to help the country through Covid-19, Pharmac has refused to fund it, and there is no timeframe for when it might.
"It should be made top-priority so they can give them the best chance at life they can get," Rachel says.
SMA is a rare and debilitating condition which affects the control of voluntary muscle movement. It is caused by a loss of motor neurons.
If untreated, SMA is expected to make those who have it weaker over time, before causing early death.
When Zayden was diagnosed with SMA II at 18 months, and frequently in and out of the Intensive Care Unit, doctors told his mother to prepare "end of life plans".
He is now 10, with his sibling Skylah-Rose also diagnosed with SMA III, a slightly less debilitating condition.
"Zayden never met milestones, he never crawled, didn't have the ability to roll from side-to-side," Rachel said.
"When he was one and a half he got referred to the paediatrician at the hospital, and after tests he was diagnosed with SMA.
"Zayden was around 2 years old and Skylah-Rose was 6 months old when we moved to Auckland to be closer to the Starship Hospital to get treatment for him. At that point he was a very, very sick boy, in and out of the hospital," she said.
"Our longest stay at the hospital was two months and our longest stay was 13 days. We were frequent flyers at the ICU and it is at that point the doctor said we should make 'end of life' plans."
By that point he was tired and fatigued all the time when he was sick, she said.
"He had started losing weight, he had feeding tubes."
They moved back to Hawke's Bay from Auckland six years ago because Rachel needed family support and "couldn't do it alone".
"SMA has impacted his mental health," she said.
"He's wheelchair-bound and has never been able to walk. He has managed only four days at school this year.
"Now he is 10 and he is sick of being prodded and poked. Sometimes he has five hospital visits a day.
"He has suicidal thoughts, it is heartbreaking hearing your 10-year-old say he doesn't want to live any more, that he cannot cope."
His sister Skylah-Rose, 8, can't run, skip, jump, and she has periods of being quite down, Rachel says.
"She was bullied at school by two girls and that got her down.
"She cries when she comes home from school, because she can't keep up with her mates.
"She can walk, but only short-distances like around the house, or classroom. For going out she needs a wheelchair."
Rachel said while she had a support network and carers, having two children with a terminal illness could get hard.
"I have family support, and carer support and talking to other mum's with kids who have SMA helps but it can get very stressful, especially with the emotional side of things."
She has had to put her life and plans on hold, because she has "no other option, but to cope".
"I sometimes feel like I am missing out on normal life. I wanted to be a nurse, but studying and working while looking after the two was not an option," she said.
"We are lucky in that mostly everything is funded, and I get paid supported living, but it is sometimes hard.
"Like getting the power bill in winter, food is the first place money goes from."
Like any other mother, she wants her children to have the best chance in life.
"We drew the short straw-twice, and sometimes it is a struggle to get through.
"It is very important the treatment for it be made top priority to give them the best chance at life they can get."
Stacey Reading is in the same boat as Rachel. Her son Liam, who is 9 years old now, was diagnosed with SMA at 18 months.
"He never did anything physical, couldn't hold his head up. I knew something was wrong."
She saw a GP, who referred her to a paediatrician and Liam tested positive for SMA.
"We were told to take him home, love him for as long as we can and make memories. That was heartbreaking," Stacey said.
"He's now a happy go-getter boy. He can't walk, he's been in a wheelchair since he was 2-1/2, but the only thing he says about it is 'it's not fair'.
"And it is a struggle financially and emotionally. I haven't worked for nine years.
"He has a 5-year-old sister and she's his little angel. She does everything for him without being asked.
"We would have loved to have a chance to see him get the drug to see what possibilities lay ahead for him."
Fiona Tolich, trustee of Patient Voice Aotearoa, fought for better medicines access and was deeply disturbed about having to fight for children to have access to a proven medicine that will stop SMA in its tracks.
Tolich, who has SMA, was dumbfounded after the latest round of government funding failed to include the drug.
"At a time when the government is giving out cash for just about everything, imagine being the parents of these children and realising that the government sees no value in treating them," Tolich said.
"This government has given $72.5 million to the racing industry, $66.3 million to Fletchers, and $15.4 million to Sky City.
"This is a matter of the New Zealand government prioritising the lives of our kids.
"Spinraza would change these kids' lives and is funded in over 50 countries but not in New Zealand.
"The annual estimated cost for all 35 children to receive this treatment is $6 million dollars.
"Pharmac have assessed the drug and given it a high priority rating, which means the only reason It is not funded is because the agency does not have enough money. As each week passes, each child is at risk of losing another motor neuron.
"Time is not on their side; that motor neuron could be the ability to sit, to stand, to swallow or breathe."
Pharmac's director of operations Lisa Williams said following advice from the Rare Disorders Subcommittee in late 2019, Pharmac engaged with Biogen, and submitted a revised application for funding.
"Following receipt of all the expert advice, Pharmac undertook a comparative assessment and prioritisation process.
"We have determined that, at this time and given the amount of investment funding currently available, we will focus on progressing funding options that are ranked higher than nusinersen [spinraza].
"We have encouraged the supplier to submit an updated proposal to Pharmac with revised pricing and/or updated evidence if this becomes available."
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