Taylor’s mother, Jade, kindly gave us this interview in April 2012. Very sadly, Taylor passed away a few months later. Jade has generously allowed us to continue telling Taylor’s story.
Taylor is five and lives in Berkshire. She has a severe form of the genetic condition Cockayne syndrome (CS), a premature ageing disorder which leads to a shortened life expectancy. She can’t swallow, is fed through a tube and is often dehydrated. She’s also in a wheelchair and can’t speak or let her mum know how she’s feeling. But she’s a loving and well-loved little girl.
Mum Jade was just 16 when she had Taylor and was supported by her mum Maria to cope with the demands of having a special needs child. At her 12-week pregnancy scan, doctors told Jade there was a high risk that she may have a baby with Down’s syndrome. When Taylor was born she had none of the features of a Down’s baby but she did have other problems, including cataracts in both her eyes and her head wasn’t growing properly.
It wasn’t until six weeks that Jade got a diagnosis. Jade and Maria saw the words ‘Cockayne syndrome?’ on one of Taylor’s discharge notices. Maria looked up the unfamiliar name on the internet and, at first, tried to hide the information she found from her daughter. ‘I was shocked when I saw the results of the Google Image search for Cockayne syndrome,’ says Jade. ‘It was obvious Taylor had it.’ This was later confirmed by doctors.
Then, two years ago, Maria died, which made Jade realise that her two children, including Taylor’s brother Tymari, age three, both needed her. ‘It took a lot for me to open my eyes and realise that my kids needed me,’ says Jade. ‘I remember sitting in hospital soon after Mum passed away and refusing to move because Taylor’s feeding tube had been leaking and the acid from her stomach was burning her. The doctors told me to go away because it was “normal” for a child like her. I was so angry. I stayed there until they said they’d close up the hole. Normally Mum would have dealt with this but I realised that I had to now.’
Most children who have the kind of severe CS that Taylor has live until they are between five and seven, when their organs can shut down. It means Jade has had to meet with Taylor’s doctors about her ‘death plan’ and to talk about issues such as whether she should be resuscitated and instructions for the ambulance crew. Every week, Jade pays towards her daughter’s funeral bill. ‘I live on edge and set my alarm to check on Taylor in the night every three hours,’ says Jade. ‘I didn’t want to think about it, but now I’m prepared and can spend as much time as possible with Taylor.’