Toby is 22 months old, and has already had six operations. He needs constant help just to breathe, which requires round-the-clock care. His exhausted parents were finally able to leave the house to do a food shop thanks to a Brian House At Home visit.
This is their story.
We had been to Brian House about four times before Covid hit. That first time he stayed overnight, we almost cancelled. It was one of the hardest things we’ve ever had to do. We thought there wouldn’t be anyone who could look after him the way we do. But actually, it was the absolute best thing.
He was perfectly safe and had loads of fun – the nurses were able to provide all the care he needed and he was able to explore new environments and play with new toys. We took our daughter Tia out – she had missed out on so much time with us. We went for dinner, to the movies and went bowling; things we just can’t do with Toby around. It was the quality time she needed, and for us it was a night not worrying about life and death constantly.
Then Covid hit, and Toby is clinically extremely vulnerable. We didn’t go anywhere. It wasn’t worth the risk.
Then, in around October, someone from Brain House got in touch and asked if we’d be interested in a home visit. Of course we were!
They came at 10am and took over Toby’s care needs, as well as offering him new toys to play with and lots of craft things to do. He absolutely loved it, and we went to the supermarket. It was amazing – it felt like we were on day release.
The team at Brian House are so playful with Toby, and so engaging. They’ve helped him make some keepsakes for us, which we will absolutely treasure.
They are a life saver for us – one of their visits came after a night when we didn’t have any overnight nurses, so we just slept while they were here. It was what we all needed.
Our lives have completely changed since Toby was born. We’ve had to give up work, and Tia has pretty much had to fend for herself. But he is an amazing little boy – he is such an inspiration to us all. He takes everything in his stride and always bounces back so fast. He’s just started to walk holding your hand – we’re so proud of him.
But every single day is a worry – that constant fear of his airway blocking and us losing him. But the Brian House staff, whether they’re at the hospice or in our home, have given us the time we need to rest and recover, and to spend with Tia, while Toby is having the best time creating special memories. We are so thankful for that.
Kerry & Steve