The Carter twins, Alexis and Baxter, have the rare genetic condition Primary Ciliary Dyskinesia (PCD), which affects the microscopic hairs that beat in the airways and sweep secretions out of the respiratory tract.
Alexis also has two other complications of the condition: dextrocardia, meaning her heart is on the right hand side; and situs inversus... her internal organs are situated on the opposite side to most people.
Both Joe and her husband Owen were, without knowing it, carrying the gene for the condition. Their eldest son Reuben does not have it.
The Carter children Baxter, Reuben and Alexis.
"Baxter and Alexis were born sick. They had lots of breathing issues and spent six weeks in the special care baby unit - SCBU - in Hastings Hospital.
"When we took them home it was on oxygen monitors. Their oxygen levels would drop randomly. It was the worst six months of my life.
"I was sleeping with one eye open, always listening to the monitor. The kids just kept getting sick. They had chronic coughs and runny noses. This wasn't normal, I fought and fought and finally at 10 months old they were referred to Starship.
"The doctor took one look and said 'I think I know exactly what they have, and if it is I am sorry'.
"Samples were sent to Australia for testing - we didn't have the test for it in New Zealand. Some time later I came home from work and there was a letter in our letterbox confirming the diagnosis.
"It has been full on ever since."
The twins have chest physiotherapy twice a day. They pick up infections easily. A common cold turns into pneumonia and a two-week hospital stay on intravenous antibiotics.
They have been on antibiotics for so long that some no longer work. They no longer have "good veins" to inject so both children have portacaths for intravenous access.
"Alex's portacath failed and was due to be replaced on April 15. The we had lockdown so no surgery and no working line. It's scary. If she gets sick we have no access for injecting antibiotics."
During the summer the children go to Terrace School, with a teacher aide, their own desks and their own stationery. They can't share.
"The school manages really well. Even on the best day the kids have a constant cough and runny nose. People look when we are out and I can see them thinking 'wipe that kid's nose' but they don't understand.
"The twins don't go to the supermarket, ever. They can't go to birthday parties or have friends to play. It's sad but we can't bring a source of bacteria into our household. Our bubble has been 24/7 for eight years."
Joe says people are now aware of how important hand washing and sanitising are.
"I hope people remember this, not just while we have the risk of Covid-19 but forever. It will help people like us, who have these issues, be safer."
While Owen is still working, Joe has had to stop. She is an essential worker but her children are too much at risk.
"I'm out of annual leave now, it's tough, but the most important thing is keeping them alive."
With CHB still registering zero cases of Covid-19 Joe has been able to start taking the children for walks.
"CHB is so open...we can take a wide berth of other people. It's incredibly quiet. I miss people, I miss working, but the children are loving going for a walk, looking at all the teddies. Baxter talks to the big one on Wellington Road.
"It's the little things. When you have kids like mine, that's enough. You have to laugh, smile and be positive..what's the alternative?
"But until this disease is gone or there's a vaccine, I will always be scared."
