My younger and only sister Frances has a genetic condition called Cri-Du-Chat Syndrome, which is a chromosomal condition that means she has a severe learning disability and has diabetes. When Covid reared its ugly head, my parents and I knew that Frances was suddenly very vulnerable and that her life would shrink beyond recognition.
She’s been pretty housebound for a year – first in lockdown with mum and dad because we couldn’t bear not to see her, and later when it got to be too much for our parents she went back to assisted living at home where some of their complex needs were better met.
When the pandemic started, we worried that without us, she would struggle because her family is her whole world. Frances, 53, is a force of nature, with fiery red hair and a temper to match. The truth is that living with her is exhausting for my elderly parents because of her condition, she can be controlling and prone to outbursts. The syndrome affects approximately 1 in 50,000 live births and symptoms can include severe cognitive, language and motor disabilities, as well as behavioral problems such as hyperactivity, aggression, outbursts and repetitive movements. Let’s put it this way – there is no good porcelain in my parents’ house anymore. She also needs to be around people of a similar age to keep her stimulated. The last thing we wanted was to put her in a nursing home, but we also had to put up with the fact that her and my parents’ mental health was suffering.
For Frances, it is impossible to fathom the concept of a pandemic. It’s hard enough being a learning disability but since Covid emerged she’s confused and further out of sync with a world that’s not always very kind. She loved seeing Boris on the news, along with accident, her favorite show on TV. She knew something big was going on, but had no idea how it would and could affect her life – and that she was more vulnerable than ever. However, Frances was deemed to be at low risk and her vaccination was scheduled for the sixth phase of the vaccine rollout.
Some days Frances would be fine, listening to her music or spending the whole day — and I mean that literally — on FaceTime to check in with family and friends. During one of my two-hour radio shows, she would sometimes call me 20 times before I gave in and answered. Other times she just didn’t bother to get out of bed. There was so little for her to get up. There are only so many puzzles she can be tempted to do. She had also given up baths. All she would do was sleep, eat, repeat, endlessly. This was of course worrying, but we knew we had to focus on what was most important: keeping her indoors until she was vaccinated. Then, we thought, we’d turn her back into the lively, talkative, social creature she is.
We thought she was protected. Only she wasn’t.
https://www.telegraph.co.uk/women/life/could-give-sister-vaccine-helping-hands/ ‘If only I could give my sister my vaccine – but helping her is out of my hands’