A mysterious "lifeline" has arrived on the doorstep of cystic fibrosis sufferer OJ Daniels' home.
An estimated $27,500 worth of "miracle drug" Trikafta was delivered to his Rotorua home on Tuesday by a courier - sender unknown.
The 19-year-old said he had received a one-month supply of Trikafta - a drug that treats the underlying cause of cystic fibrosis.
The anonymous sender wrote on the box: "Keep fighting hard - you've got this. I hope this helps."
OJ said, "I actually still can't believe it's actually in my hands."
His mother, Trish Daniels - who has already lost one child to cystic fibrosis - called the delivery a "miracle".
Cystic fibrosis is a genetically inherited condition that produces thick and sticky mucus and mainly affects a person's lungs and digestive system. Specialists believe the average life expectancy of a person with cystic fibrosis is mid-to-late 30s.
Trikafta is not publicly funded in New Zealand. A petition seeking to change this has been presented to Parliament, claiming clinical trials have shown "significant improvement" in health outcomes for people with the condition.
Cystic Fibrosis New Zealand chief executive Lisa Burns said the estimated annual cost of the drug was $330,000 excluding GST. One month's worth would be about $27,500 plus GST.
Burns believed the donation was a "deliberate act of kindness".
"But this shouldn't need to happen - Trikafta should be funded by Pharmac and available to Kiwis in New Zealand as it is in more than 30 other countries around the world."
Pharmac has previously said it would like to fund Trikafta and was in talks with its manufacturer, but the cost was a barrier within the agency's set government funding.
Last month, Trish told the Rotorua Daily Post they were "desperate" to get their hands on Trikafta.
Trish lost her daughter, Santana Daniels, to cystic fibrosis in 2017.
"If we don't get Trikafta I'm likely to lose my son," Trish said through tears at the time.
When the pair spoke to the Rotorua Daily Post again yesterday, there was brighter energy in their living room.
OJ said he was asleep on Tuesday morning when his mother woke him up.
"Mum just turns on the light and says, 'look at this', and then just throws the box over.
"I looked at it and it was Trikafta.
"I was still half asleep so I didn't know what was happening ... I wasn't expecting it at all."
Trish said it was a "routine" day where OJ had had a rough night trying to sleep.
"We get a knock at the door ... the courier's just left a package on the doorstep.
The package was addressed to OJ, but "curiosity" got the best of Trish and she opened it.
"I ripped it open because I needed to see if someone was just playing a joke ... so I opened up the whole box and pulled out one of the wallets with the tablets in it and sure enough, it was Trikafta.
"I was jumping up and down - I couldn't hold back."
When OJ questioned who sent it, Trish said she had "no idea".
"It's anonymous - I don't think they want us to know who it's from and we're going to respect their wishes for that.
"It was probably the most amazing thing ... it was better than actually winning Lotto.
"It's hard to believe that someone's gone out of their way, this wonderful person who's just gifted something that could literally change, if not save, his life."
OJ said the drug would hopefully "lift [him] up and get [him] out of the critical zone".
He said he had been "super unwell" for the past six weeks and "very out of breath".
"More than usual - to the point where I'm just stuck in this chair basically.
"I struggle to sleep due to not just only coughing but also breathing because when I lay flat, I can hardly breathe."
A month's worth of Trikafta would hopefully give him a "boost" with his energy levels and help him gain weight, Trish said.
"That will help him to keep fighting. A month is just enough to get him through because right now it's better than doing nothing and going into hospital where the drugs aren't working."
Trish said her son was "on a downhill spiral".
"His life is basically home, bed, bathroom, bed, bathroom.
"He's 19 - he should be out there and enjoying life but instead he's fighting for his life at home."
She still feared for his life, even after the delivery.
"We're still a long way off - this has just given us a pause button from all the chaos that cystic fibrosis causes.
"It's a long journey and it's a very difficult one … It gives us hope that we're that close to getting it [a lifetime supply] … but our fight isn't over even when he gets it, because we've still got 300-500 [people with cystic fibrosis] out there that also need it."
OJ's doctor has advised him not to take the donated drug yet.
"We've been hopefully encouraged to ... submit an application to Vertex to see if OJ is eligible for ongoing treatment of Trikafta," Trish said.
Vertex is the manufacturer and supplier of Trikafta, and operates a compassionate managed access programme to the drug.
OJ had previously applied for the programme but was unsuccessful.
They submitted a new application on Thursday night, which would take at least two weeks to process.
"If he gets approved, what they want to do is start him on the gifted Trikafta and just get him into hospital to observe and monitor him - make sure there's no serious side effects or complications," Trish said.
"It's paramount that we wait just until we find out if he gets approved for the programme or not.
"Once we're on the programme, we won't have to worry about running out because he [would be] already getting Trikafta and it would be ongoing."
When asked what the first thing OJ would do when he was well enough after taking Trikafta, he said he would go for a "nice long walk with the family".
"I haven't gone for a walk in ages - I haven't been outside actually in ages.
"Anywhere would suffice."
To the anonymous sender, OJ said: "Thank you so much for sending this miracle drug.
"It's definitely given me an opportunity to try to explore a little bit of the world, given me a little bit more hope for hopefully getting access to the managed programme."
Trish said: "You've basically handed him a lifeline and I can't thank you enough."
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