Flynn faces lifetime of being extra careful

 Flynn Brodie with his mother Jo at their Titahi Bay home
Flynn Brodie with his mother Jo at their Titahi Bay home

As little as a torn toenail can land him in hospital, but all Flynn Brodie cares about is being as cool as a Teenage Mutant Ninja Turtle.

Leonardo, to be precise. The blue one.

"Because he can kill baddies," Flynn says matter-of-factly, waving a stick menacingly before tearing off to play in the backyard of his Titahi Bay home.

Watching Flynn zipping around, there is no indication that he has two rare disorders that can turn ordinary falls and tumbles into life-threatening incidents.

But at three-and-a-half years old, Flynn has been hospitalised more than many people will be in their lifetimes.

He's been diagnosed with the genetic disorder pachyonychia congenita, known as PC, which only has 1000 known sufferers worldwide. Flynn is believed to be the only person in New Zealand with the disorder, caused by a change in one keretin gene.

It means the filaments needed for skin and nails do not join properly, causing the skin to blister and thicken.

He also has severe haemophilia, with weekly injections needed to help his blood clot normally.

When The Dominion Post first visited Flynn, the toddler had been diagnosed and parents Jo and Liam and sister Isla, 6, were coming to terms with his PC and how to manage it.

Nearly two years on, and Mrs Brodie has quit her job to watch over her son at home fulltime.

The most worrying complication of PC, aside from the painful blistering, is that it causes a white plaque to coat Flynn's throat. This flares up intermittently, closing over his airway, Mrs Brodie says.

He spent more than two months in Starship hospital last year alone, after being close to death several times.

In August last year, when he collapsed and stopped breathing in mum's arms, they thought they had lost him.

"He actually passed out, which terrified us. His eyes were rolling in the back of his head . . . we've had quite a lot of ambulance rides," says Mrs Brodie.

"But he is a star, it's almost like an unwritten rule that if he's not upset, why should we be?"

In October, Flynn underwent a New Zealand-first procedure at Starship Hospital. Paediatric surgeon Dr Colin Barber performed laser surgery to remove layers of plaque from the back of his throat.

Flynn was immediately able to breathe easier, Mrs Brodie said. But the plaque is expected to grow back, and more surgery will be likely.

The family now have an at-home adrenaline nebuliser to relieve Flynn's worst symptoms, and carry a letter to every hospital visit to alert emergency department staff to his condition.

And the haeomophilia is still a concern. Earlier this year, Mrs Brodie had to rush Flynn to hospital when a closed door ripped his toenail off and it wouldn't stop bleeding.

The uncertainty of not knowing what might happen as Flynn grows is frustrating, but they are prepared for whatever the next year might bring.

"We feel a little more confident now that we have a plan in place, and I think we're doing the best that we can at the moment," Mr Brodie says. "A lot of people often say to me ‘I don't know how you guys cope,' and it's actually pretty easy because you just re-set your norm."

There is only one American-based PC support group in the world, but talking to other parents with sick children on visits to Starship had helped the Brodies gain some perspective.

And being around Flynn always helped, Mrs Brodie said. "He's positive, he just goes through life."

The Dominion Post