SEVEN women who met as 'first time' mums on maternity leave have rallied in support of one of their children diagnosed with one of the rarest conditions in the world.

It took 18 months and a battery of tests to establish that Sonny Newton, now aged five, didn't, in fact, have the life-limiting Duchenne muscular dystrophy his parents Ebony and Michael most feared.

But what he does have represents a greater unknown. "I was over the moon it wasn't Duchenne," said Ebony, "but then it took another few months to find out that it is an ultra-rare form of muscular dystrophy - there has only been another six cases in the world diagnosed.

"It doesn't even have a name, it's so rare, and all that's really known is it affects the MICU1 gene."

It was only five or six years ago scientists linked a mutation in this particular gene to the disruption of mitochondria, the element found in most living cells that turns food into the chemical energy a body needs.

Like Duchenne's, the condition reveals itself as a child begins to miss developmental milestones. Sonny was late learning to roll over, sit up and crawl as a baby, and he didn't take his first steps until he was two.

"Because there are only six other people in the world with this, there are no case studies," said Ebony, "so we don't really know what to expect, other than that they have said he could potentially have problems with his nervous system."

They did know that the challenges already posed by his poor motor skills, which affect everything from his walking and running to holding a pen, would be forever present though.

The Newtons, who live in Haltwhistle, are grateful today for the information and support they have received from the Tynedale branch of the Muscular Dystrophy UK charity.

So when Ebony's fellow members of The Nappy Crew, as the group of friends who originally met while having their first babies jokingly call themselves, were looking for a way to demonstrate their support, they came up with the idea of doing a sponsored walk around Talkin Tarn, near Brampton, in aid of the branch.

The seven mothers and the 15 children they now have between them duly set off on foot and an assortment of bikes, scooters and pushchairs to do just that, raising £1,455 in the process.

Ebony said: "I felt quite emotional on the day, because a lot of the other children have bikes and are able to pedal and Sonny can't do that yet - it's difficult to see him struggling like that.

"But it was just so lovely too. I was quite overwhelmed by the support."