The little fighter who is allergic to food
SEVEN-YEAR-OLD FED THROUGH TUBE FOR 17 HOURS
MEET the seven-year-old boy who is so allergic to food he has had to be fed through a tube since he was a baby.
But despite being fed through a tube for 17 hours a day and having to carry a food pack around weighing the same as two bags of sugar, battling Ezekiel Martin lets nothing stop him.
Now he’s leading a national awareness campaign to help other children and families in similar plights.
Ezekiel, from Consett, first starting to show problems when he wasn’t putting any weight on as a baby and was taken to the Great North Children’s Hospital at Newcastle’s Royal Victoria Infirmary.
He was immediately put on a feeding tube which came as a shock to his parents.
Ezekiel’s mum, Amy Martin, who is in her 30s and is a fulltime carer for her son, said: “It was a really worrying time.
“We initially found out about Ezekiel’s condition when he was 11 months after we took into hospital because he was under-weight.
“The hospital then fitted him with a gastro tube for him to get his nutrition and stay hydrated. He was fitted with that tube for around three months.
“Ezekiel began gaining a little weight, but not enough. He had gained a few pounds during the three months. It then became apparent that he wouldn’t be able to manage without the tube.
“We found out that he wouldn’t be able to manage eating or drinking orally as anyone else could. The hospital then fitted a tube into his tummy for the long term.
“Most people with the same or similar situation as Ezekiel have different medical reasons on why they can’t digest food orally, but for Ezekiel, it’s due to eating problems and food allergies.
“I was initially worried about him needing this and what it means for him the rest of his life. I hadn’t heard anything about this condition before and didn’t know what to expect.
“The nurses at the hospital were very supportive. They explained to us clearly what the condition is, how we would deal with his condition and his typical day to day life.
“They gave us the correct support and they assured us that it’s actually the best way for him to get his nutrition. We now get loads of support from the nurses at Durham Community Complex Nursing Team, they’ve been amazing.”
Ezekiel receives ‘enteral nutrition’ in liquid form through a surgical jejunostomy tube which is inserted directly into his gastrointestinal tract.
Amy said despite Ezekiel’s positive attitude, there has been challenging times for a parent to a child who is tubefed.
“Every month we have over 50 boxes of medical supplies delivered to the house, and so we have a cupboard and a shed full of the medicines Ezekiel
needs just to get his basic nutrition. Obviously, life is not straightforward.
“A typical day for Ezekiel is he has periods throughout the day where he is attached to the tube, such as during meals, and when he needs to take his medicine.
“At night, he is continuously attached to his feed throughout the night. So when he goes to bed at around 7pm at night straight through to when he wakes up the next morning he supplied with his medicine and nutrition bags.”
Despite his struggles, Ezekiel, who also lives with dad, Stuart, an electrician in his 40s, is like any normal seven-yearold
Amy added: “Ezekiel has access to everything that a normal seven-year-old has.
However, he has to carry a 2,100g bag containing his feed when out and about. He either carries it in backpack or in he has a chair to help support him.”
This year, Ezekiel is leading the campaign, Home Artificial Nutrition Week (HAN Week), run by the charity, Patients on Intravenous and Naso-gastric Nutrition Treatment (PINNT).
PINNT was set up to help support patients like Ezekiel who need artificial nutrition
Ezekiel is making a call out to other people with a feeding tube to challenge themselves to do something outside their comfort zone.
Ezekiel said: “I think being tube-fed is okay. It can be quite hard sometimes but I can still do lots of things that I love.
“I am really proud to record my message and hope it makes people feel good. I hope people will learn about tube feeding see that we are just like other people.”
Alongside his work championing PINNT, he has also led awareness raising activities at his school, including making an assembly presentation on tube feeding and leading his classmates in an experiment to test out wearing similar backpacks. While life is not straightforward, Amy said she is so proud of her son. She said: “It’s a real honour for Ezekiel to lead this campaign.
“PINNT does such good work to support families who have to adjust to the realities of life with tube feeding. Despite Ezekiel’s positive attitude, there is no denying that being a parent to a child who is tube fed is challenging.
“Obviously, life is not straightforward. The support and sense of community that we get from PINNT is vital. I’m thrilled for him that he is able to give something back especially this year when a lot of people who rely on artificial nutrition have had a particularly difficult few months because of additional health concerns during coronavirus.”
Carolyn Wheatley, Founder of PINNT added: ‘Ezekiel embodies the spirit of HAN Week. He is always challenging himself and wants other people to do the same too in order to show the world that relying on artificial nutrition shouldn’t hold you back.
“He has had a lot to cope with in his life so far but has a determination to make things better for other people going through challenges too.
“Our goal during HAN Week is to inspire people to feel better and more positive about life, and to help raise awareness, and we are thrilled that Ezekiel will lead our efforts to do this.
“Many of our members have been particularly vulnerable to coronavirus and have had a difficult few months. Ezekiel has been chosen to lead this campaign because he has just the right attitude to lift everybody’s spirits. Well done Ezekiel!”
I think being tube-fed is OK. It can be quite hard sometimes but I can still do lots of things that I love.
EZEKIEL MARTIN