I was brought to tears watching him and his mum speak. This is something they have to live with every day.
Trish says that having a child with cystic fibrosis is "probably the worst thing" a parent could go through.
OJ just wants to know what it's like to breathe normally. "Right now just feels restricting but I heard it feels nice."
This sentence struck me. He has heard that breathing normally - something we can easily take for granted in our daily lives - feels nice.
I also can't even begin to understand what his mother is going through - losing one child and then facing losing another.
This week, we also told the story of Ashley Watson, who also has cystic fibrosis.
He has been deemed unwell enough to receive the 'miracle' drug Trikafta through a compassionate managed access programme funded by the drug's manufacturer and supplier.
But the cruel twist is he has to watch his younger brother Troy, who also has the disease, struggle daily because he is considered too well to qualify for the free treatment.
Troy's specialist told him there was "no chance" for someone like him without Government funding.
Understandably, both brothers are heartbroken.
Brothers Troy (left) and Ashley Watson both have cystic fibrosis but only one has access to Trikafta. Photo / Andrew Warner
Trikafta has been dubbed a ''miracle drug'' and targets the underlying cause of cystic fibrosis. But at $330,000 a year, it is not cheap and not funded in New Zealand.
For some families, this figure is so out of reach that it may as well be $330 million.
Pharmac is the government agency that decides which medicines and related products are funded in New Zealand. Hundreds of young Kiwis with cystic fibrosis are pleading with the agency to fund Trikafta.
The agency says it is good at negotiating for lower-cost medicines so it can fund more expensive drugs.
Pharmac operations director Lisa Williams says Pharmac would like to fund Trikafta but it operates on a "fixed budget" that the Government sets. Trikafta, she says, is ''expensive''.
"There will always be more medicines we want to fund than we can afford. This means we have to make difficult choices about what medicines are funded."
To be in such a desperate state is heartbreaking and Pharmac must get hundreds, if not thousands, of pleas from gravely ill Kiwis every year.
I believe Pharmac does its best with finite resources but it is simply wrong that people are suffering when there is a drug that can change their lives.
In 2020-2021, it spent $1.04 billion on medicines. But clearly more is needed.
Making the drug available will mean people with cystic fibrosis will be less of a burden on the health system and avoid other ongoing costs to the country.
Trikafta can give young people such as Charlie, OJ and Troy a quality of life that would allow them to become productive members of society - something I see that they desperately crave.
Pharmac does not have a bottomless pit of money but we have seen other high-profile drugs such as Keytruda for melanoma and Herceptin for breast cancer be successfully funded - no doubt changing people's outcomes.
The Government must consider the stories of these young people in next month's Budget.
More money will mean less misery.
Yes, there are many deserving demands on the Government's Budget - but what price are we, as a society, willing to put on people's lives and suffering when there are solutions?
The Government has shown, through the pandemic, just how valued Kiwi lives are.
It paid us to stay home and paid for our Covid treatments and vaccines.
Let's give the same courtesy to desperate people who can be helped by modern drugs.
The Government needs to dramatically increase Pharmac's budget.
