My younger and only sibling, Frances, has a genetic disease called Cri Du Chat syndrome, a chromosomal condition which means she is severely learning disabled and has diabetes. When Covid reared its ugly head, my parents and I knew Frances was suddenly very vulnerable and that her life would shrink beyond all recognition.
For a year, she has been pretty much housebound – for the first lockdown with Mum and Dad, because we couldn’t bear not to see her, and later, when it became too much for our parents, she went back to her supported living home where some of her complex needs were better met.
When the pandemic first started, we worried she would struggle to cope without us because her family are her whole world. Frances, 53, is a force of nature, with fiery red hair and a temper to go with it. The truth is, living with her is exhausting for my elderly parents because her condition means that she can be controlling and is prone to outbursts. The syndrome affects around 1 in 50,000 live births and symptoms can include severe cognitive speech and motor disabilities and behavioural problems such as hyperactivity, aggression, outbursts and repetitive movements. Put it this way – there’s no good china left in my parents’ house. She also needs to be with people of a similar age so she is stimulated. The last thing we wanted was to let her go into a care home, but we also had to face the fact that her mental health, and that of my parents, was suffering too.
For Frances to fathom the concept of a pandemic is impossible. It’s hard enough being learning disabled, but since Covid came along she has been bewildered and even further out of step with a world that is not always terribly kind. She loved watching Boris on the news, along with Casualty, her favourite TV show. She knew something huge was going on but didn’t have any idea how it would and could affect her life – and that she was more vulnerable than she had ever been. Yet Frances wasn’t deemed sufficiently at risk, and her vaccination scheduled for the sixth phase of the vaccine roll-out.
Some days Frances was OK, and she would listen to her music or spend all day – and I mean that literally – on FaceTime contacting family and friends. During one of my two-hour radio shows, she’d sometimes ring me 20 times until I’d give in and pick up. Other times she just didn’t bother getting out of bed. There was so little for her to get up for. There are only so many jigsaws she can be enticed to do. She’d also given up on baths. All she’d do was sleep, eat, repeat, ad infinitum. This was worrying of course, but we knew we had to focus on what was most important: keeping her safe indoors until she was vaccinated. Then, we thought, we’d get her back to being the vibrant, chatty, social creature that she is.
We thought she was protected. Except she wasn’t.