Mother of toddler with genetic condition fears he could die if he doesn't get PEG fitted

The family of a toddler with complex needs have told UTV he is a 'ticking time bomb', and without urgent medical attention - namely the insertion of a PEG to give him medication and nutrition - they fear he could die.

Two-year-old Frankie Corbett was born prematurely and his development has been delayed.

Mum Rebecca always suspected there was something more seriously wrong -with repeated blood in his stools and episodes when he would stop breathing.

The 24-year-old told UTV it was last November when his health took a dramatic turn for the worse.

"Frankie took a really bad bleed in my sister's car. He vomited blood and collapsed. He was sheet white before that so I kind of got that something was happening to him. We phoned the ambulance and they contacted the Royal to tell him he was on his way he was that sick. His heart rate was 220, his body just wasn't coping anymore,'' she said.

The little boy was finally referred to a specialist in Sheffield and last month clinically diagnosed with a genetic condition called HHT which affects his blood vessels and leads him to have regular internal and life threatening bleeds

''Life has just been turned upside down. We're told Frankie has this condition just get on with it. But it's not like that for us. We live every day in fear he's going to die and I've said that to them. They've reassured us that won't happen but they're not actively helping him. They can't help him when he's well so how are they going to help him when he's bleeding out?''

Rebecca said without urgent medical attention and in particular the insertion of an PEG to administer medication and nutrition they fear he could die. She says due to damage caused internally eating and even drinking milk is causing him severe pain.

"We had to video all weekend Frankie not accepting this milk. They couldn't understand why he's dropping weight even though we were telling them. Eventually they agreed to feed him via an NG (nasogastric) tube and still he's not gaining weight so they've realised it's a bigger problem.''

Rebecca said a PEG which would allow Frankie to get his nutrition and medication directly into his stomach would make a 'massive' difference.

''Every time has to be done in A&E. He's a risk to life every time he gets his NG tube placed. Every time he could bleed out to death,'' she added.

There are at least ninety children on a waiting list for the PEG procedure. Frankie's family say they feel their child has been failed by the system here in Northern Ireland.

''Frankie is like a ticking time bomb. But the Royal don't see this. I don't know what it'll take to open their eyes and see that this is serious. This could take Frankie's life if they don't act." Rebecca said.

In a statement a spokesperson for the Belfast Trust said:

"We understand that it is a worrying and difficult time for families when a child is waiting for treatment and we work to explore all possible options to ensure children get the care they need.

"Frankie Corbett has a paediatric consultant providing care within Belfast Trust. His case has been reviewed and his next appointment is scheduled for the end of this month."

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