Cambridge

A feeding tube and three IVs a day: life as a teenager with a complex illness

Ollie Duell loves gaming just as much as any other 14-year-old boy, particularly Minecraft and Fortnite.

He hopes to become a game developer, attends North Cambridge Academy and his mum says he's got a chilled-out, go-with-the-flow attitude.

But Ollie has a feeding tube, three IV medications and four oral medications to take every single day. He can only make it to school for four three-hour stints a week – plus two homeschooling sessions.

He's got a rare bowl disorder called pseudo-obstruction of an unknown cause, and also has an underactive thyroid, arthritis and sleep apnoea.

Taken ill at just six weeks old

Ollie's mum Claire, 38, really wanted a second child with partner Gavin, but she struggled to get pregnant.

She said: "It took us a long time, and we were expecting a perfect baby to add into our lives."

But just six weeks after her new son was born, he fell ill, having his first surgery at just eight weeks old.

"It felt like we were cheated," said Claire. "Like we had signed up for something and it was completely different, so it was very hard to begin with."

Baby Ollie had a blockage in his oesophagus, which is relatively common in young babies, but Claire said: "They normally get rid of it and they're healthy, it's perfectly common. But he refused to eat and then he used to vomit everywhere and it just got progressively worse."

At just age five Ollie underwent surgery to have a transplant – but after a while things didn't go well.

Claire said: "He had a stomach and bowel transplant when he was five, but unfortunately a year after his transplant it rejected, and we managed to get it back but the second time it rejected it chronically."

Now Ollie is on several medications as well as being attached to tubes and machines to help with his feeding and breathing.

Claire said: "A day with Ollie will involve three lots of IV medications, four lots of oral medications, stoma changes as he has an ileostomy, he has a feeding tube so there's feeding pumps to deal with. He's also in a wheelchair as well because he has arthritis and just because he gets really tired.

"There's lots of bed changes and clothes changes. It's pretty full on from when you get up until you go to bed.

"His first medication is at 6am and he has his last at 10pm. But that's dependent on him sleeping through the night, which he often doesn't because of pain or discomfort."

Day-to-day life

But Claire maintains a positive outlook, taking each day as it comes, in part influenced by Ollie's own laid back nature.

Claire spoke of a recent appearance by Ollie on BBC Radio Cambridgeshire, saying: "He was just so chilled about it, and I was very nervous. He just goes with the flow he doesn't worry about much."

The family, who live in Kinross Road, Cambridge, take every day as it comes, and although Ollie would like to be a game developer, Claire said: "For us, we don't look too far into the future because he has a life-limiting condition, so we never know, so we try to cram in as much as we can every day."

Ollie receives care from East Anglia's Children's Hospices (EACH), which allows his family much needed respite from his care, as well as taking him out on trips and providing support groups for his family.

Claire said: "When you're riding this bonkers journey you kind of feel like you're on your own, the hospice supplies sRead More – Source