Brave boy battles back after rare stroke

Sarah Thomas, with twins Cohan (left) and Lewis Railton, says learning Lewis had had a stroke came as a huge shock. Photo / Sarah Ivey

Look up Lewis Railton on Facebook and you'll see him whizzing about in a Superman outfit.

The fair-headed toddler might only be 3, but in his mother's eyes, he's every bit a man of steel.

The Whakatane boy has battled a rare and sudden stroke so violent that only half of those who suffer it live past a month.

It's now been almost three months since a burst blood vessel shifted Lewis' brain about 8mm and left him paralysed on the right side of his body.

His parents, Sarah Thomas and Andrew Railton, still don't know why their healthy, adventurous son woke up with slurred speech on August 28.

"We thought he'd just bitten his tongue," Ms Thomas told the Weekend Herald yesterday.

The next day, she took Lewis and his identical twin brother Cohan into town for a shopping trip, unaware what had happened to Lewis' brain.

That night he woke up screaming shortly before midnight, and began vomiting. Staff at Whakatane Hospital's emergency department first thought they were dealing with a case of dehydration.

"He wasn't offering us a lot of clues as to what was going on, and we then thought it might be meningitis," Ms Thomas said.

"But it turned out it wasn't that either. On the Wednesday, I noticed how his smile had dropped and when I tickled him, he still wouldn't smile."

She also noticed his right arm was limp. A CT scan revealed Lewis had suffered a brain bleed.

"At that point, I just went into shock. It was horrific ... our whole world turned upside down in that instant and suddenly, life came down to minute to minute ... hour to hour."

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

"Doctors were telling us how very sick he was, how badly things could turn out, how it was a waiting game ... and how there was nothing they could do to treat a brain bleed."

But over three crucial weeks at the hospital, Lewis toughed it out.

Ms Thomas left her job to stay with him in Auckland, dividing her life between Waitemata District Health Board's Wilson Centre for Children and home in Whakatane.

"The last two months has been session after session of intensive rehabilitation. When it first happened, he couldn't talk, couldn't walk and he was back in nappies and being spoon-fed again.

"Only now has he just started to walk again, which is amazing, although he's still quite wobbly on his splints."

But while Lewis has made it through the worst, the next 12 months will determine how badly he will be affected as an adult.

After he arrives home next week, Lewis will be eligible for only two visits to an occupational therapist a month under child development services provided publicly.

With their savings gone, Lewis' parents face paying an extra $500 each week for the four weekly sessions their son needs. Friends and relatives have rallied around, and the family is selling all the belongings it can part with. Ms Thomas says more money is going to be needed.

A bank account has been set up as the family look at other ways they can raise funds.

How to help Lewis

* Make a donation to the Whakatane KiwiBank account "Lewis Railton". Account 38 9008 0744339 00

* Leave a message of support on Lewis' Facebook page.