Family stories

Mikey’s story

Mikey was just nine-months old when he was fitted with a tracheostomy to help him breathe. His condition is so complex that he needs to be watched and monitored all day and all night. For his mum Chevonne, that often means 24 hours without any sleep. For families like Mikey’s, Chestnut Tree House is a lifeline.

“Mikey is the only one in the world with his condition”

Not long after Mikey was born, we realised he was struggling to breathe. The doctors told us he’d never be able to sit up or communicate with us. It was devastating. But as he got a little older, they were able to fit a tracheostomy tube in his throat to help him breathe, and two days later, my strong boy was sitting up. It’s been like that ever since – he’s surprised us and delighted us again and again.

Over the years he’s had hundreds of tests and other investigative surgeries, but doctors still don’t know what syndrome he has. What we do know is that he needs 24/7 supervision so he doesn’t stop breathing and regular ventilator care so his body has enough oxygen.

Mikey smiling

“The nurses are so skilled they can care for Mikey’s complex needs”

There are times I’ve had to say goodbye to Mikey when his tracheostomy has come out and we’ve had to resuscitate him. It’s a heartbreak I cannot begin to explain. It’s a huge responsibility on my shoulders, to keep my only son breathing and I rarely get a chance to have a break which can be exhausting.

Thankfully, there’s a place where he can get the specialist care he needs – and that’s Chestnut Tree House. When the big-hearted care team saw there were children like Mikey with tracheostomies who needed long-term ventilator support, they trained their nurses in this specialist area. And this means that me and his dad, George, can have a break from our constant caring duties.

Mikey with Spiderman

“When you’re 10, there’s nothing more important than having fun”

When the nurses visit us at home to take Mikey on fun trips out, George and I will spend some time together. Not as mum and dad, not as carers – just as us. We’ll go for a meal and enjoy a date night, or sometimes we’ll just drive to the beach and watch the waves. Other times, I might have gone a couple of days without sleep, and they’ll come and watch Mikey just so that I can go to bed.

The best thing is that Mikey gets to have fun and do all the things that kids his age enjoy. Recently he wanted to climb the high nets at an adventure park for the first time. There’s no way I could have done this on my own with him because of all the medical equipment and the risk of his tracheostomy coming out. But Chestnut’s incredible nurses put in hours of planning and lots of staff to make it happen. He had the most amazing time. And now with their support he goes rock climbing, trampolining and plays adventure golf.

Mikey with his family

It’s hard to express what the support means to my family

Mikey doesn’t have a voice and prefers to communicate using Makaton – a language that uses signs and symbols. Lots of the children cared for by Chestnut Tree House also use Makaton so when he visits the hospice he can communicate with them and all the staff who know it too. He’s an absolute terror, and constantly has everyone laughing!

At first, we worried about him staying at Chestnut on his own, but he absolutely loves it. He doesn’t care about leaving us because he has so much fun. Playing tag in the woodland walk, trampolining, riding bikes or feeding reindeer in the garden! All whilst getting the care he needs from Chestnut nurses.

It’s hard to express what the support of Chestnut Tree House means to my family. I honestly don’t know how I would have got through the last few years without Chestnut’s support.