Reason for boy's stroke puzzles medical experts

Parents inspired by bravery of their 'superhero' twin son as he recovers from a rare and deadly brain bleed Lewis (left) gets a big hug from his twin, Cohan, at their home in Whakatane. Photo / Alan Gibson

The parents of a little boy who has battled back from a rare and deadly stroke are under a cloud of uncertainty, with medical experts at odds over what caused the sudden attack.

But Andrew Railton and Sarah Thomas say the buzz and bravery of their "superhero" 3-year-old Lewis Railton will see them through.

The Whakatane boy, an identical twin, was admitted to hospital in August after a burst blood vessel shifted his brain about 8mm and left him with slurred speech and paralysis on the right side of his body.

The huge bleed, which swelled to the size of a hockey ball, was not discovered until days after and was first thought by hospital staff to be dehydration and then meningitis.

Aboard a Westpac rescue helicopter sent from the Starship hospital, Lewis was diagnosed as having suffered a cerebral arteriovenous malformation - rare in young children.

His parents were told a test after the blood had gone would solve the mystery. But the Starship's radiology and neurosurgery experts have disagreed over the case, and yesterday sat down to analyse an MRI scan.

"In that respect, we are back to square one over what happened to him - we don't know why he had a brain bleed that resulted in a stroke," Ms Thomas said.

More worryingly, it posed the question of whether Lewis' brother Cohan could also be at risk.

"We are really concerned, having identical twins with the same DNA, that it could happen to Cohan as well," she said.

The couple's stress has been eased by the courage of their son.

"He's probably the most inspirational person Andrew and I have ever met ... he's the one who has kept us motivated and going through this horrible situation, he's remained so positive this whole time," she said.

"And we had the best Christmas we've all ever had, as there was a while where we didn't think the four of us would be home."

The family had also been left "completely astonished" at the generosity of their community and others around the country - including many Weekend Herald readers who rallied around Lewis when his plight was publicised in November.

At that stage, the family had exhausted their savings and faced paying an extra $500 each week for the crucial four-weekly rehabilitation sessions their son needs.

But donations from readers and more than $5000 raised at a major garage sale - where locals dropped off goods ranging from tyres to a pallet packed with manchester and other items - have ensured Lewis intensive rehabilitation for at least another year.

"We just want to say thank you to the New Zealand public. People have been amazing and the support we've received has just made us feel so proud to be New Zealanders."

And while specialists in a fortnight's time will lay out the road ahead for Lewis, the signs he has so far shown are promising.

"At first we thought we would have to get him in to some kind of school, but he started pre-school last week, and everyone agrees he's gone ahead in leaps and bounds.

"He's trying to run and get back on his bike again and people can understand him when he talks."

Readers can leave messages of support for Lewis and his family on his Facebook page.