A 14-month-old girl has a rare condition that makes her allergic to all foods, even her mother’s breast milk.
Since birth, Lola Boyd has been unable to feed without experiencing an allergic reaction.
The little girl has a condition where her gut cannot process food proteins called food protein-induced enterocolitis syndrome, also known as FPIES.
Her mother, Karina Bannigan, said she had to be extremely careful what she gave Lola.
‘I hold her a lot because it gives her comfort from the pain and because I worry she might find a stray crumb. I can’t risk her going into shock,’ the mother told Kidspot.
Ms Bannigan first noticed her daughter’s discomfort when Lola was irritable and hard to settle.
In the first weeks following Lola’s premature birth, Ms Bannigan, from Sydney, thought the little girl had colic.
But soon it was clear her daughter’s restlessness was much more serious when she started showing symptoms of severe pain, passing lots of stools a day, blood in her stools and a raw bottom.
‘I had taken her to numerous doctors, hospitals and ultrasounds to figure out what was going on,’ Ms Bannigan told Daily Mail Australia.
‘I always knew something was wrong with Lola. Even though doctors told me she was lactose intolerant, this and that.’
The mother, who already had three boys before the birth of her daughter at 35 weeks and five days by caesarean, made any changes she could to to give Lola some relief.
The 31-year-old said the one thing that did calm Lola down was holding her and the mother did this ‘all the time’.
But the worst of it came when Ms Bannigan tried to feed her baby rice and oats.
‘When I gave her rice, three to four hours later she had a reaction. She was having acute diarrhoea,’ she told Daily Mail Australia.
‘I haven’t seen anything like this. It lasted for weeks.’
After her daughter got over the bout of diarrhoea, Ms Bannigan tried out oats but the little girl’s reaction was even worse than the one she had to the rice.
‘That’s when she had the vomiting. She went all pale and floppy,’ the mother told Daily Mail Australia.
‘I was really scared. I felt sick myself seeing her sick. I didn’t know what was going. I knew it wasn’t a normal vomit.’
Ms Bannigan called an ambulance but her husband arrived home first.
The couple raced to Westmead Children’s Hospital and it was there they finally found the answers they had been searching for.
Allergist Dr Sam Mehr diagnosed Lola with FPIES at six months old.
‘I cried [when I heard the news]. I was confused and scared and alone,’ Ms Bannigan told Daily Mail Australia.
With not a lot of places to find support, the mother-of-four turned to the FPIES Australian Facebook Group.
It was there Ms Bannigan said she found comfort and drew from the experiences of other women who had been through the same thing as herself with their children.
‘A lady who runs the Facebook page, Belinda, has been through all it. She was the best to turn to because she knew how I was feeling,’ Ms Bannigan said.
Ms Bannigan said she hoped telling her story would help raise awareness of the disease.
Only 0.34 per cent of the population have FPIES, according to Kidspot.
The mother urged people to following their instincts when it came to their child.
‘You know your child better than anyone knows your child, so always follow your mother’s intuition,’ she told Daily Mail Australia.
Lola now has a feeding tube to help her get more nutrients.
The tube helps her eat as she has never been bottle fed due to her allergies.
The little girl has been trialling a new prescription formula over the past few days.
‘She will still have the reactions [when being fed through the tube],’ Ms Bannigan said.
‘[But] it’s a trial and error and so far she’s tolerating it [the formula].’