The family of a six-year-old boy with a rare condition which means he cannot eat solid foods is fundraising £50,000 so he can finally eat a cupcake.
Jude Carrington, of Hoddesdon, Hertfordshire, suffers from severe inflammation of his intestines – known as eosinophilic colitis.
He has only ever been able to manage liquidised food since he was 10 months old, as even a bite of solid food will give him severe sickness, diarrhoea and an eczema flare up.
For the past two years, he has used a feeding tube to get enough nutrients, slowly released from a backpack he has to wear at school.
If the money is raised, specialists in the US will be able to carry out tests and hopefully cure him, as the NHS are out of options.
Jude Carrington, six, longs to eat a cupcake. But a rare eating disorder – severe inflammation of his intestines, known as eosinophilic colitis – means he cannot eat solid foods
For the past two years, he has used a feeding tube to get enough nutrients, as a liquidised diet that he has had since he was 10 months old was not enough calories
Jude’s mother, Jo Carrington, 33, fears her son will never lead a normal life after all possible options on the NHS have been exhausted, according to doctors.
The childminder said: ‘The UK doctors are hoping he will grow out of it or we’ll find food that will be less painful to manage, but their main priority is to keep him nutritionally well so he can lead a semi-normal life.
‘Jude has never tried a birthday cake, he has never had an ice cream on holiday and he has never enjoyed a Christmas dinner.
‘But the main thing he’s desperate to try is a cupcake. He has seen his friends eat them as a treat or when celebrating and this is something he is yet to have.
‘We have to give him a bottle of frozen water for lunchtime at school just so he can feel involved on the dining experience with his friends.
‘He absolutely hates it and gets very upset that he can’t eat like everyone else.’
She added: ‘There have been times when I can’t even eat because I just look at him and see devastation in his eyes and it breaks my heart.’
Jude and his family, mother Jo Carrington, 33, and husband Steve, 35, are desperately trying to raise £50,000 to see specialists in the UK who could offer a cure after tests
Mrs Carrington said it is difficult to eat in front of her son, who gets severe sickness, diarrhoea and an eczema flare up if he has as little as a bite of potato or chicken
Mrs Carrington, pictured with Jude’s feeding tube equipment which he has had since May 2017, said Jude’s body ‘reacts to everything like an allergy’
Jude’s problem started from just a few months old, meaning he has never been able to eat a normal meal.
WHAT IS EOSINOPHILIC COLITIS (EC)?
Eosinophilic colitis, which occurs in the colon, is a eosinophilic gastroinestinal disorder
Eosinophilic colitis (EC) is rare and not very well understood compared to eosinophilic esophagitis – which occurs in the esophagus.
According to the American Partnership for Eosinophilic Disorder, a type of white blood cell, the eosinophil, causes injury and inflammation to the large intestine.
The symptoms are nausea, vomiting, abdominal pain, and occasionally diarrhea.
The diagnosis is confirmed by a blood test showing a high eosinophil count, and a diagnostic intestinal biopsy that shows a large number of eosinophils in the body.
The cause is unknown in many patients, who can be children or adults.
Some infants may have milk-soy protein intolerance which may look like eosinophilic colitis but is typically outgrown.
Mrs Carrington, who is married to Steve, 35, said: ‘Jude’s eating problems started when he was four months old, he started rejecting milk and began regularly vomiting and suffering from diarrhoea.
‘When he was ten months old, he stopped eating completely resulting him to pass out, we took him straight to Great Ormond Street Hospital for further tests.
‘They carried out a colonoscopy and gastroscopy, where they found his colon was inflamed and diagnosed him with eosinophilic colitis.
‘The steroids were really strong to help control the pain but he continued to have stomach ache, vomiting and diarrhoea.
‘It was like having a newborn with the constant battle of bottle feeding and changing his nappy but for five years.’
The average calorie intake for a five-year-old is 1,200 to 1,400 calories per day.
Before Jude had a feeding tube put into his stomach in May 2017, he was only drinking 800ml of hypoallergenic formula daily – half the recommended intake.
Mrs Carrington said: ‘Every time he has tried something such as a rice, potato, chicken he has severe sickness, diarrhoea and eczema, his body reacts to everything like an allergy.’
Mrs Carrington, who feels guilty to eat in front of Jude, became vegetarian because of Jude’s love of animals.
She said: ‘I’ve been a vegetarian for the past year because one day Jude said “if I could eat food, I wouldn’t eat meat as I wouldn’t want to eat the animals” so giving it up was the least I can do.
Jude gets upset that he can’t eat with his friends at school, and so his parents give him a bottle of frozen water for lunchtime so he can feel involved on the dining experience
Jude gets nutrients slowly from his backpack, pictured, which he must wear at school
Jude’s toy dinosaur which wears his old feeding tube
‘I won’t pretend it has ever been easy, there has been days when I have just been crying on my husband’s shoulder. We would do anything to swap places with him.’
The family need £50,000 to cover the costs at Children’s Hospital Colorado, US, where specialists could save Jude from his misery.
Mrs Carrington said: ‘I can’t sit back and wait for him to possible grow out of it because what if he doesn’t.
‘We have been in contact with a doctor in America who is currently waiting for Jude’s biopsy slides who will then determine what other tests will be carried out.
‘We need to go to America to get a second opinion and diagnosis to give our son the life he deserves.
‘When we raise enough money to go to America, we hope Jude will fulfil his dream and will try a cupcake.’
‘But he is the most resilient and strong-willed child I have ever met, he is so brave and just loves animals.’
Jude has been under the care of the same paediatrician since he was a child, Dr Raina Sanjay, at Princess Alexandra Hospital, Redditch.
He confirmed there were no further options available for Jude in the UK.
Dr Sanjay said: ‘Jude has been severely affected by eosinophilic colitis since a baby, it is very challenging and distressing for his family as he is constantly in discomfort.
‘In spite of maximum treatment, his symptoms have not been relieved and there is no other option but for Jude to go to America.’
To donate visit: https://www.justgiving.com/crowdfunding/judecarrington
Jude has never eaten ice cream on holiday or Christmas dinner