Help us make every moment count

Despite his comical personality and appetite for mischief, I’ve never actually heard Beau laugh.

That’s because ever since he was three months old, he’s had a tracheostomy – an opening in his windpipe to help him breathe – due to an extremely rare and life-threatening condition. Congenital central hypoventilation syndrome (CCHS) is a genetic condition affecting around 150 people in the UK.

Put simply, Beau can’t breathe while he’s asleep. He requires 24-hour care and takes a suction machine, emergency tracheostomy box and ventilator everywhere he goes.

We were told to say our goodbyes twice in his first six weeks.

We didn’t see his face until he was three months old because it was covered in tubes and tapes.

Chestnut is like a home away from home.

Chestnut Tree House has brought so much joy and comfort. The team don’t just support Beau, they support us all. One of my favourite moments was seeing Beau and Harrison playing together in the outdoor play park at the hospice, free to just be kids, without the usual worries.

Recently, we held Beau’s birthday party here. He attends a mainstream nursery, and I really wanted his friends and their parents to see Chestnut. Unless you’ve visited, you don’t really understand what children’s hospices are about. People expect to see very poorly children and they’re surprised that it’s so full of life.

I worried that neither of our boys would be able to have a normal life.

We found out that Beau had to have a tracheostomy which would be vulnerable to infection. Harrison was at nursery at the time, and I was worried we’d have to take him out. But touch wood, Beau’s pretty robust. The last time he had to go into hospital was over Christmas in 2023, when he had RSV and Covid, but he’s had a lot of things trying to kill him, including a double lung collapse, pneumonia and meningitis.

I’m always a bit worried that if Beau got lost in a shop, he can’t communicate to say, “Where’s my mummy?” Provided he always has somebody by his side that knows him, he looks like an average three-year-old, but if he were to fall over and pass out without someone trained on putting on his ventilator, he would be in danger very quickly.