Hi, listeners, Benjamin here.

In this week's nature, we have a feature article investigating a quest to find a treatment for a rare genetic disease.

In this podcast Extra, Jeff Marsh speaks to some of the people involved.

Having your first child can be a nerve-wracking time in anyone's life.

But for Nick Sero, things took an early turn for the worse.

So it was in the year 2000, it was a Sunday.

And we'd brought our baby son, Julian, back from the clinic where he was born.

And we were changing his nappies and we noticed that they were red

black. And so we were very alarmed and we called the doctor and the doctor came in and tested

for blood and didn't find any. And then he kind of scratched his head and said, well, what have you been

eating today? And it's so happened that we'd had some red cabbage. And so he said, it's the red cabbage,

you know, going into the breast milk, into the child, into the urine. Now, he just went off and

we... Nick and his wife were very sceptical and sought out a second opinion. A few months later,

after tests were run at Great Ormond Street Hospital in the UK, the results came back. Their

son had a rare genetic disease called Alcaaptanuria, or AKU for short.

And we were just completely shocked.

You know, we'd never heard about it.

We'd never really heard about rare diseases, to be perfectly honest.

You know, it was really a step into a whole new world.

At the time, this new world looked very bleak to Nick,

his inevitable internet searches, which he'd been warned against,

threw up plenty of scare stories about what lay ahead for his newborn son,

...