Meet Katie and Tyler

“Every hour of every day, I’m Tyler’s carer. And every hour of every day, I fear for his life.

The four hours a month that Chestnut care for Tyler are an absolute lifeline to us.

Especially as I can’t ask a babysitter to look after Tyler. Because 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.”

“My kids adore the hydrotherapy pool at Chestnut, and Tyler can’t swim anywhere else because of the risk of infection. I rely on Chestnut for these moments where Tyler can be a child.

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 Chestnut Tree House’s nurse, Karen – 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.”