We make sure ill daughter still enjoys life

vulnerable group, being over 70. And we’re important to Clare for the future. We’ve battled to keep her alive. Rett Syndrome affects one in 12,000 females.

It results in profound physical and communication difficulties. They have no speech. And she has abnormal breathing.

Clare is in that group who are the most vulnerable. I’m frightened about Clare catching coronavirus. It seems like the focus is only just coming on to social care settings. There has been a lot said about the NHS and that’s quite right. But there are people in care homes who are just being disregarded – in life and in death.

Hopefully, ministers will look more closely at what needs to be done. Our daughter is being cared for by people who love her, highly trained people. But they are not paid a good rate for the fantastic job they are doing. Before the virus struck, Clare would come home to us every other weekend and stay two nights. We used to visit. We can’t visit now. But she does come home with us once a week. We use full PPE. All the time, we are taking temperatures. We feel if she loses contact with us, she will lose her interest in life At the beginning of this we didn’t

think she could survive lockdown, physically and mentally. Clare had pneumonia and sepsis last November and was in hospital 12 days. They didn’t think she would survive. Her lungs were compromised. That makes us worry more about her getting any infection.

We want to make sure whatever life she has left is as good quality and as easy as it can be. She likes to do things she has always done. She has a routine. When she’s here it’s similar to being in the home – there are set feeding times.

But we can do other things with her here she enjoys. We have a fish pond and she likes that. We sing to her.

There are special times.

Susie Davies, 82 WITH serious underlying conditions, Susie, of West London, has had ovarian and breast cancer and recently received large doses of chemotherapy. She is vulnerable to infection but has found many ways to keep busy. Susie: ROUTINES Daughter Clare PLENTY TO DO Susie takes positives out of lockdown UNDER FIRE Donald Trump