26th November, 2015
Kim describes what it was like when her daughter Rachel fell into a coma at Christmas following a sudden illness.“Rachel came home from Leicester University on 14th December 2009 suffering from what we thought was swine flu. After three days at home she seemed to be getting better, so her sister Grace and I spent the morning wrapping presents in her bedroom whilst she wrote the gift tags. Rachel decided to sleep in the afternoon and when I went to wake her at around 4 pm it was obvious there was something very wrong with her as she couldn't communicate with me at all.
I called 999 and after they arrived she suffered a seizure. She was blue lighted to Queen Elizabeth Hospital in Kings Lynn on what was a very snowy night.
The next morning she was transferred to Addenbrooke’s Hospital. We were not allowed to travel in the ambulance because of the severe weather. She was sent directly to Neurology Critical Care where the only option was to put her into an induced coma as she was fitting constantly.
The doctors had no idea if Rachel would live or die and if she recovered what her condition would be.
My husband Peter and I lived in emergency accommodation in the nurses’ quarters. We stayed there for over 5 months, only leaving her for a few hours to sleep. When we finally went home, we made the round trip to the hospital every day.
Rachel remained in a coma until April 2010 and despite many tests in the UK and abroad they were unable to give a diagnosis. All they knew was that her immune system was attacking her brain. Six years later they still cannot identify the antibody that is the root of the problem.
Christmas didn't really exist for us in 2009. Rachel’s sister spent the morning with relatives and then came over to Addenbrooke’s in the afternoon bringing our Christmas lunch on a plate to heat up in a microwave in the relatives’ room. All of our presents remained wrapped for 12 months because none of us felt able to open them without Rachel.
Rachel has been left with epilepsy which unfortunately cannot be controlled by drugs and although she is able to care for herself, she needs someone near at hand for her own safety. Until this summer I have been her main carer but she needs someone of her own age to spend time with. We have been fortunate to find “Volunteering Matters” a charity that liaises between gap year students & people needing carers. In August Paula joined us from Germany for a year. She has made an immense difference to all of our lives.
Rachel and I started going to yoga after she left hospital. We also use toning tables and go swimming and she has recently joined a gym. She attends Headway Cambridgeshire’s Youth Group which is very important to her because she is meeting young people with similar problems and participating in activities with them.
People ask us how we cope. How did we live through those months whilst Rachel was in hospital and the years since she came home? We survived as a family by sharing the pain. There is a saying – If life throws you a bad deal just keep moving forward - and that is what we have all tried to do.
We were fortunate that we had supportive family and friends. People moved into our home, cared for the pets and did the washing. At our office the staff kept our business going and met up with Peter at the hospital to update him.
We didn't know what the future would hold for us during the Christmas 2009 so we took each day as it came. Christmas 2015 is now on its way and the future is still uncertain as Rachel is waiting for deep brain surgery. We will keep moving forward. We will never stop trying to get Rachel’s epilepsy under control or even cured. We will never give up hope."
“ Thank you for the support and advice that you have been giving my husband. This has in turn taken a lot of pressure off me and has helped me through his bad days and angry spells. ”