Three-year-old Indi Rigby suffers from a rare food allergy, and according to specialist doctors in London it is the worst case they have ever come across and is first of its kind in Northern Ireland .
Indi, from Hillhall suffers from Food Protein Induced Enterocolitis Syndrome, a condition which causes inflammation of the intestines and can be triggered by almost any food.
Her parents Clare Reid and Stephen Rigby, are hoping one day she will eat solid foods again and grow out of the condition but when that will be they have been told, is anyone’s guess.
In February, she will be introduced to solids such as pears or bananas before she is seen again by specialists at St Thomas’s in London in May.
From the time she was born in November 2012, Indi had problems feeding and Clare was told she suffered from cows milk protein allergy but that she would grow out of it by the time she was one.
She was put on prescription milk but when she started to wean she took allergic reactions to everything she ate. Eating would give her such bad vomiting and diarrhoea that her body would go into shock.
“It was like something you would see in the Exorcist,” said her mother Clare.
“We went to see an allergy doctor and they did a skin prick test and nothing was coming up because this condition she has, there’s no test for it.
“We have to give her the food and just wait to see what happens which is heart-wrenching because you know you are giving her something that could make her really ill.”
After months of trying she went to St Thomas’s Hospital close to Great Ormond Street to see if they had any answers.
They told Indi she was allergic to protein and had to stop all foods and was placed on a protein free formula.
They carried out a scope and biopsy to find that they had never seen a case quite like this.
“We have been told that come February we will introduce her to some food,” said Clare. “If that doesn’t work then she will be put on a drug.
“Her allergy is so bad that she cannot go on any medicine. If she has a temperature we just have to strip her down until her temperature goes away.
“People have said to me that she looks like any other normal child. She never stops and is full of energy.
“When she sits at the table she knows she is not allowed food so we pretend that she is eating spaghetti bolognese or something and she pretends to eat.
“When she goes to nursery she will have to have a classroom assistant so that she cannot eat anything and I don’t know if there are any nurseries like that.
“I cannot go even into a food court where there are smells of foods as her skins will go blotchy and swell up.
“I have constant worrries about her but I have been told to live for today and don’t worry about tomorrow.”
FPIES is an unusual type of food allergy which usually only occurs in babies and very young children.
Some children, like Indi, have FPIES to more than one food protein and there is no specific treatment, just avoiding the trigger foods.