He will turn two years old next week but little Anthony Black has not yet eaten a proper meal, however, his mum Alicja hopes to remedy that with a life-changing treatment
Born at just 27 weeks, Anthony has spent 13 months of his short life in hospital and feeds through a tube.
When he was just four days old he suffered Necrotising enterocolitis (NEC) - a serious illness in which tissues in the intestine (gut) become inflamed and start to die.
After several surgeries, he has lost his large bowel and has just one metre of his small intestine and now has a stoma.
Since then he has been tube fed through his nose and has never been fed orally.
His dad Lee Black (30) who works for Moy Park and mum Alicja have been by their baby’s side both here at the Belfast Royal Hospital for Sick Children and in Birmingham Hospital. “They saved him,” said Alicja.
Anthony is wheelchair-bound, has epilepsy and cerebral palsy as well as the tube and mum wants to help get him to eat independently.
“Little Anthony is able to suck and swallow safely so he should be able to eat but because he has always been using a tube, he just doesn’t know how to,” said Alicja. She explained there is no facility in the UK to help teach him to eat properly but a friend told her of a programme in Austria called ‘No Tube’ which helps babies learn to eat after prolonged tubing.
“But it is too expensive - two weeks there would cost us around £9,000,” said the 26-year-old mum.
However there is a programme run by the No Tube company which would be able to help them in their own home. Netcoaching is a web-based approach to helping a child from a feeding tube that is no longer medically necessary.
Alicja says that it is a 24 hour support web based and phone guide weaning her baby from the feeding tube.
She said the programme was substantially cheaper at £4,500 but it was still way off their budget and the couple have set up a fundraising page.
“After an assessment and I send over all Anthony’s medical notes, they will give us round the clock care remotely to help slowly wean him off the tube.
“He didn’t have an easy start of life. It is not easy and we don’t think we will be able to get it all,” said Alicja who had to give up her job to look after her baby full time.”
If and when the money is raised dad Lee plans to walk from Craigavon Hospital to the Royal Belfast Hospital for Sick Children. Here is how to donate: www.gofundme.com/anthony-black-to-be-ng-tube-free