A FAMILY faces heartbreak as two brothers with the same genetic condition are only likely to live until the age of two. Rocky and Bentley Smith, aged two and one, both need 24-hour care and are constantly in and out of hospital.

They both suffer from spinal muscular atrophy (SMA), a genetic condition that causes severe mobility and breathing issues.

Children with the condition have a life expectancy of about two years, and the race is now on to raise money for a family holiday before it’s too late.

Their mother Justine says a memory-making trip to Disneyland would mean “everything” to her family.

“They’re really happy boys,” said Justine. “Rocky loves his iPad, he can’t really do anything else. He can’t sit up and he can’t swallow. Bentley is having gene therapy - we’re trying to see if his movement gets better. He’s constantly ill.”

She added when Rocky gets ill, they take him to Worcestershire Royal Hospital because that’s what it states in their care plan, but they can’t take him in because he needs specialist treatment, so they wait in an ambulance until he can be taken to Birmingham or Stoke.

Worcester News: Rocky and Bentley with sister LexieRocky and Bentley with sister Lexie

“It sounds bad but we’ve got used to it because it’s the same every time. It’s a constant battle.”

Rocky was just three months old when he was first admitted to hospital with breathing difficulties. When his lungs and airways collapsed, he had to spend three months in intensive care in Stoke.

End of life care

“They were telling us it was either muscular dystrophy or SMA, but he’d been so poorly I couldn’t listen,” said Justine. “When they sat us down and said he’d got SMA, and that the life expectancy is two, it was such a shock.

“Now Rocky is two we’ve had to plan his end of life care - and doing that really brought it all home. We couldn’t face it when he was a baby and I still really didn’t want to do it but it had to be done.”

Justine said husband Rocky is “amazing” and that daughter Lexie, nine, has been “really good”, even learning to use some of the medical equipment her brothers rely on.

Worcester News: The brothers are constantly in and out of hospitalThe brothers are constantly in and out of hospital

Justine and her husband both gave up work to look after the boys, and the trip to Disneyland is likely to be expensive with the cheapest quotes to insure Rocky and Bentley coming in at £1,700.

Staff and customers at Majestic Bingo in Worcester have been fundraising for the family and Kayti Sartain has donated £1,000 from her company Dragon Star Security.

“I’ve buried a child and it’s something you don’t get over,” said Kayti. “We’re trying to raise money to try to ease the financial burden on them and so hopefully they can get away on holiday and make some memories together.”

To donate, head to www.gofundme.com/f/once-in-a-life-dream-holiday