Seven-year-old Ezekiel, has had a feeding tube since he was a baby and has to be artificially fed for 17 hours each day. As a PINNT ambassador he proudly opened our awareness week with a call out to other people with a feeding tube to challenge themselves to do something outside their comfort zone.
Ezekiel relies on tube feeding because of food allergies and eating problems. Ezekiel receives tube feeding; enteral nutrition, in liquid form through a catheter which is inserted directly into his gastrointestinal tract. He receives most of his nutrition through tube feeding and can only eat small amounts of food and drink small glasses of water. Since he was 11 months old, he has carried a 2100g backpack containing his feed when out and about. He has had multiple hospital stays and 21 operations in five years.
says, “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.”
Ezekiel’s Mum Amy
says, “It’s a real honour for Ezekiel to lead this campaign and support PINNT. 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. 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. 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.”
It is estimated that around 47,000 people in the UK are dependent on enteral nutrition at home.
Awareness week has now come to a close for 2020 but our campaign continues!
Your support will help PINNT continue it's work by supporting members while adjusting and adapting to living with their artificial nutrition. Your donation will be allocated into general funds. We will use the donations to support ongoing activities and respond to the needs of members and provide new resources in line with their needs. We will use the money wisely and responsibility.