Charity campaign launched in memory of tiny Kendal 'hero' (From The Westmorland Gazette)

Charity campaign launched in memory of tiny Kendal 'hero'

12:00pm Thursday 21st March 2013 in News By Anna Clarke, Reporter

THE parents of a tragic baby born with his organs outside his body have launched a charity campaign in his memory.

Rebecca and Sean Beh, of Highgate, Kendal, are on a mission to raise awareness of ‘gastroschisis’, which caused their son, Akira, to die at just nine weeks old.

Akira, born in September last year, underwent several operations, but lost his fight after succumbing to septicaemia.

Now Mr and Mrs Beh, who were unable to hold, or feed, Akira until he was a month old, say they are determined to honour their tiny ‘hero’ by raising the profile of the condition, as well as pulling in cash for the hospital where he was treated.

Mrs Beh, 21, who had wanted to give birth at either Westmorland General Hospital, or Lancaster Royal Infirm- ary, but had to be taken to specialist St Mary’s, in Man-chester, explained: “We found out at 15 weeks that he had gastroschisis, but we were told it was just his bowel out-side his body.

“He became one of the rarest cases in the UK because he was born with everything outside, all his external organs outside. He should have died that first week, we were told.”

Akira improved briefly and, after a month, the couple were able to hold and feed him.

However, just weeks later, it was discovered he had two holes in his bowel. Liver failure and septicaemia also struck, and he began to turn blue as the infection spread.

Mrs Beh, who had to make the heart-breaking decision to discontinue his treatment, added: “We took him out of the incubator and we sat on the sofa with my mum and we just held him.

“We held him in our arms and I just said: ‘Sorry’.

“I told him he’d earned his wings and now he could fly. And he did.”

Fifteen nurses attended his funeral. Now the couple are determined that his memory will live on through charity events.

The first event will be a family fun day, at Fun for Kids, in Parkside Road, Kendal, on April 28, from 10.30am to 3.30pm.

The event will include a barbecue, cake stall and raffle, among other attractions.

Money raised will be split between the intensive care unit and the gastroschisis ward at St Mary’s Hospital.

Anybody who wants more information, or who can don-ate a raffle prize, is asked to email Mrs Beh on gundam_love @hotmail.co.uk