For little Indi Rigby sharing a meal with her family is something she does not get to enjoy.

The two-year-old was diagnosed at the start of the year with the rare food allergy, Food Protein Induced Enterocolitis Syndrome - which means she can not eat any food.

Indi, who lives with mum Clare Reid, dad Stephen Rigby and sister Ella-Louise in Lisburn, is fed a special formula and it is not known when she will be able to eat solid foods again.

The tot, who will turn three in November, will start vomiting and become lethargic and appear lifeless just hours after eating foods her sister can enjoy.

After months of worry, her parents were flown to London and Indi was diagnosed with FPIES which causes inflammation of the small and large intestine and can be triggered by almost any food.




Speaking to Belfast Live, mum Clare said every day was a struggle for her daughter who has a severe type of the allergy.

At times the mum-of-two said it had been "touch and go" with Indi as some reactions have been more severe than others leaving her badly dehydrated.

But doctors hope Indi may grow out of the allergy by the time she is four.

"It's not very well known and she's one of the first in Northern Ireland to be formally diagnosed with it but there's more children coming through now with it," said mum Clare.

"She was two before she got a diagnosis, we did not know what was wrong with her beforehand.

"When she was born she had trouble feeding and they told me she had a cows milk protein allergy and she would grow out of it by the time she was one.

"But then when I started to wean her she started to have an allergic reaction to everything and it would give her profuse vomiting and diarrhoea to the point her body would go into shock. She was just lifeless, that was when she was about 10 months.

"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 what to see what happens which is heart-wrenching because you know you are giving her something that could make her really ill.

"It's an awful position to be in with the not knowing."

FPIES is an unusual type of food allergy which usually only occurs in babies and very young children.

In general, the reaction begins around two to four hours after eating the trigger food and can last several days.

Some children, like Indi, have FPIES to more than one food protein and there is no specific treatment, just avoiding the trigger foods.



"Doctors told us they were not sure why Indi's body was reacting the way it was and that's why they decided to send us to St Thomas' in London - which is connected to Great Ormond Street - as they have a big allergy clinic," said Clare, a mum-of-two.

"She was just over two at the time.

When Indi reacts badly to a food, her parents have to rush her to hospital and have been given a special letter to explain to doctors how to treat her condition.

"They said she was one of the more severe cases they have seen, her whole insides are awful with the reactions," said Clare.

Indi is on complete gut restriction and is on no food, instead getting her nutrients from a special formula. She is fed some of the formula through a tube attached to her nose.

"They told us most children start to grow out of it when they are four or five but because Indi is more severe and reacts to everything they are not really sure what way Indi will go, if she ever will be able to eat properly," said Clare, who said Indi is just on formula and water.

Clare said Indi's condition is a constant challenge with birthday parties, Halloween and special occasions causing problems.

"Whenever we go say to a soft play area, immediately all I see is food on the tables," said Clare.

"I feel like it holds her back. Birthday parties are difficult and Halloween is bad as she will not be able to go out trick or treating around the doors as she can't eat anything they give her.

"She understands to a degree but she will ask for food and will say 'I would like this or that'.

"I have to tell her it will hurt her tummy. But if you offer her something she will say 'I can't have that, it will make my tummy sore'.

"She also sees what her older sister is eating, we try to keep things as normal as possible."

Clare wanted to share her daughter's story to raise awareness for the condition ahead of Global FPIES Day on October 14.

To find out more about the condition visit

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