Charity Registration number: 511009
Covid-19 has brought unprecedented challenges to Brian House. The team have had to adapt their services to the ever-changing needs of their patients and families, while also adhering to government guidelines surrounding the pandemic.
Here at the Kentown Wizard Foundation we are blown away by the determination of the Brian House team, who have continued to support their children and families throughout these testing times. Children just like Toby, whose vulnerability during the pandemic meant that he was not able to visit Brian House… so Brian House came to him!
Toby is 21 months old and has already had six operations. He needs constant help just to breathe, which requires round-the-clock care. Thanks to Brian House home visits his exhausted parents were finally able to leave the house to do a food shop.
Toby’s family had this to say;
“We had been to Brian House about four times before COVID-19 hit. That first time he stayed overnight, we almost cancelled. It was one of the hardest things we have ever had to do. We thought there would not be anyone who could look after him the way we do. But 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 cannot 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-19 hit, and Toby is clinically extremely vulnerable. We did not go anywhere. It was not worth the risk. Then in around October, someone from Brain House got in touch and asked if we would 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 caring of Toby, and so engaging. They have helped him make some keepsakes for us, which I will absolutely treasure. They are a life saver for us – one of their visits came after a night when we did not 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 have had to give up work, and Tia has pretty much had to fend for herself. But he is an amazing little boy – such an inspiration to us all. He takes everything in his stride and always bounces back so fast. 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 are at the hospice or in our home, have given us the time we need to rest and recover, and to spend time with Tia, while Toby is having the best time creating special memories. We are so thankful for that.”