Beau has doctors baffled
BEAU Carey is almost four months old and is a very special boy - one of only eight babies in the world living with a rare and serious condition.
Parents Sarah Crouch, 21, and fiance Damian Carey, 23, of East Lismore, were devastated to find out about baby Beau's condition when he was two months old.
After noticing his breathing was different, doctors discovered that not only does Beau have a serious respiratory problem, where his trachea is almost closed up, he also has a ventricular septal defect - an extra large hole in his heart - as well as an extra artery from his brain to his heart that needs removing and enclosed vessels inside his heart.
He is one of eight babies in the world born in the past 10 years with his condition, which makes it difficult and risky to treat.
"The doctors don't know how to treat it because they've never seen it before," Ms Crouch said.
Beau is now known by doctors worldwide as together they work to find a solution to his condition.
Ms Crouch said the couple has to constantly watch Beau in case his breathing or heartbeat changes, or if he begins coughing.
They've been driving to Brisbane for specialist visits and tests at least twice a week, which makes it hard to work, Ms Crouch said.
"We've both got jobs, we just can't work," she said.
"(And) Centrelink said because of his age we can't get anything, because a four-month-old 'needs care anyway'," Ms Crouch said.
They do receive some reimbursement for petrol and some accommodation for their trips to Brisbane from the NSW Government through the IPTASS scheme, but it's just not enough.
"It's very strenuous, but we're getting there," Ms Crouch said.
On February 26 Beau will undergo major heart surgery and depending on how he recovers, he could be in hospital for anything from two weeks until the end of the year.
You can help:
BBQ and cake sale fundraiser outside DIY Hardware Store, Barker Street, Casino tomorrow from 9am to raise money for Beau's treatment