Three-year-old from Lisburn battles rare allergy condition

Indi Rigby
Indi Rigby

A three-year-old girl from Lisburn is battling a rare condition that effectively means she is allergic to food.

Indi Rigby suffers from a food allergy that specialist doctors in London say is the worst case they have ever come across.

She has Food Protein Induced Enterocolitis Syndrome (FPIES), a condition which causes inflammation of the intestines and can be triggered by almost any food. It is believed to be the first case of its kind diagnosed in Northern Ireland.

Her parents Clare Reid and Stephen Rigby are hoping one day she will eat solid foods again and grow out of the condition.

In February, she will be introduced to solids such as pears or bananas before she is seen again by specialists at St Thomas’s Hospital in London in May.

From when she was born in November 2012, Indi had problems feeding. Her parents were told she suffered from cows milk protein allergy but were assured she would soon overcome the condition.

India was put on prescription milk but when she started to wean she took allergic reactions to everything she ate. Eating would give her such extreme vomiting and diarrhoea that her body would go into shock.

“It was like something you would see in the Exorcist,” said mum 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 in vain for answers the family took Indi to St Thomas’s, near Great Ormond Street, in London.

They concluded India is allergic to protein and had to stop all foods immediately. She was placed on a protein-free formula.

“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 skin will go blotchy and swell up.”

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.