Family stories

Tyler’s story

Tyler is the longest living child with pulmonary vein stenosis. His medical needs are so complex that his mum, Katie, never has a moment off. The only break she gets is when Chestnut Tree House nurses are looking after Tyler. Whilst he’s enjoying fun trips out, Katie has a few hours to recharge and spend time with her daughters and husband.

Tyler, his mum and sisters.

“Every hour of every day, I fear for Tyler’s life.”

My son Tyler is a complex boy and always has been. He had three operations before his first birthday and didn’t leave the hospital once until he was 15 months old. Since then, he’s turned blue, he’s collapsed and has been rushed into A&E several times. And he’s only 12. So you can understand why I’m anxious about him all the time.

The care Tyler gets from Chestnut each month is an absolute lifeline to us. I love cuddling my boy but with three other children to take care of too, all with bronchomalacia (an airway condition), my hands are constantly full.

Montage images of Tyler. In the hospice with a tube in his nose (left) and outdoors having fun with llamas (right)

“I can’t ask a babysitter to look after Tyler”

Tyler is one in a billion, which makes his care very difficult. When doctors said he had a ‘1% chance of catching sepsis pneumonia’, he caught it, when they said he had a ‘5% chance of having a stroke’, he had one. He’s also lived far longer than doctors ever predicted. He’s the longest living child with pulmonary vein stenosis, most children sadly only live to two.

His complex condition means he requires the very best specialist care. The kind of specialist care that not just anyone can give.

A montage of Tyler, with his mum giving a big thumbs up (left) and on a speedboat, laughing (right)

“We rely on Chestnut for much needed breaks”

The pressure on me and my husband, Simon, is huge. We’re Tyler’s 24/7 carers and it’s up to us to keep him safe and happy. I worry so much about Tyler that we purposely live near a hospital. After all he’s been through, and after all the friends he’s lost to heart problems, I can’t help but plan for the worst.

Our family needs support we can rely on. And like every family, we need fun too. Chestnut makes both possible. My kids adore the hydrotherapy pool at the hospice, and Tyler can’t swim anywhere else because of the risk of infection. I rely on Chestnut for precious moments where Tyler can be a child.

A montage of Tyler, with Karen having an ice cream (left) and on a day out (right)

“He loves going on adventures with the Chestnut nurses”

Beyond the pool, the hospice brings so much joy to Tyler’s life. His favourite thing in the world is going to see the Bluebell Railway with Karen, one of the Chestnut nurses – she’s taken him so many times, the train guards know his name! She’s become part of the family and Tyler counts down the ‘sleeps’ until he can go with Karen to see the amazing trains again.

While my boy is having a wonderful time and being expertly cared for, I can spend time with his younger sisters without needing to give all my attention to Tyler’s care. Or I can do all the things around the house that need doing, or even better, I can go out for a date with my husband. An hour of Chestnut’s care is so precious to the whole family, giving Tyler a moment of joy and independence, and giving me time to breathe and reconnect with my daughters and Simon.