Be friends with my little girl, pleads mother
A little-known condition, which leaves her prone to attacks of violent vomiting, makes life a misery for Zara Thatcher, 11, and her family. By Alex Peake – News Reporter
“Please be my sick daughter’s friend.” That is the heart-felt plea from Karen Thatcher this week as she battles to raise awareness of her young child’s rare illness.
Against all the odds, plucky Zara Thatcher, lives as normal a life as possible, despite being one of only 63 children in Britain diagnosed with Cyclical Vomiting Syndrome. The incurable condition has left lonely Zara with a lack of confidence as she finds it increasingly difficult to fit in with other children her own age.
Mum Karen said: “It is miserable for her. It is hard for her to build friendships, although she does have one very good friend. A lot of kids don’t like illness and one mother even came up to me and said ‘can my child catch something off yours?’ That hurts.”
Zara spends her life constantly in fear of violent bouts of sickness which leave her in what is described as a ‘waking coma’. Once the bouts are triggered Zara spends more than 50 per cent of her time between Queen Mary’s Hospital, Carshalton, Surrey and her home in Sanderstead, South Croydon, Surrey.
Last summer she made the step from primary to secondary school and Karen has praised both schools for being supportive and understanding. But she said her daughter never finds coming to terms with the illness easy, no matter how much people go out of their way to offer support.
She said: “she often says ‘way me , mum, why me, why am I always sick? It makes it hard for us to do things as a family. When we go on holiday, we have to inform the local hospital of her condition. And when she was meant to go on a school trip to the Isle of Wight, she was being taken to the hospital at 10 o’clock in the morning in tears, as the school coach was leaving.”
Karen explained how it even effects everyday family outings as Zara is constantly worrying about being sick; it stops her fully enjoying trips to the theatre and nights out. Even when she went to see her favourite group, Steps, it was on her mind that she might be struck down by vomiting.
The little known condition was first discovered in 1882 but since then very little has been done in the way of research on it. Although the sufferer experiences healthy symptoms between episodes, when they occur vomiting and retching can happen as often as five or six times an hour. It is then followed by unrelenting nausea, extreme lethargy and no body control. There is, however, an association based in Dorset which organises fun days and other events for sufferers to meet up. At the last event, at Birmingham Children’s Hospital, Zara made friends with another girl her age who suffers from the illness. But she lives in Hertfordshire.
Karen added: “We want to raise awareness of cyclical vomiting syndrome and raise money for research into it but, most of all, we would like to meet other people in the area who suffer from it. Not only for Zara’s sake; it would be nice to get support from other parents, you can learn a lot from other people’s experiences. It can be difficult talking to people because they do not know what you are going through.”
Zara wrote this when she was 18
When I was younger, I used to have regular attacks with well periods in between. I was in hospital so much that it became like my second home. Sometimes, I would be discharged from hospital on a Wednesday but would be re-admitted with another attack by the Saturday. My longest spell in hospital was three weeks but they tended to be for five days. Now I am 18, instead of having regular attacks, I am having less attacks where I am actually vomiting but my CVS is now affecting me every day, instead of every few weeks with headaches, nausea and stomach pains. When I was younger, I had to be admitted to hospital everytime I had an attack but luckily we can now cope with it at home. Instead of letting it affect me though, I just try to put the fact that I feel sick or have stomach pains to the back of my mind and get on with everything. I still wake up at around 2:30am every few weeks feeling the onset of the attack minutes away but luckily I now take my anti-sickness medication up to my bedroom with me at night, being this is when my attacks usually start, so that I can have my medication straight away. Then I usually have a few days of feeling ill with having all the other symptoms of a CVS attack but without the vomiting due to the anti-sickness medication- just like having a CVS attack without actually throwing up! Although I wouldn’t like either, these are better than having an attack with vomiting all the time as it means I can still go to school, even though I feel rough!
It’s hard to explain the vomiting and nausea of CVS but its just not like normal vomiting and nausea. Basically, it’s not like the sort you get when you’ve eaten too much birthday cake!
One of the worst things I get with my CVS is feeling hungry and feeling sick at the same time, as you don’t know if you should eat or not! I also feel sick after eating often, which can be annoying when I go out for the day shopping or to a friend’s house as I don’t want to eat too much incase I feel sick after or an attack starts. I also get acid reflux, which is annoying. Everytime I go to the dentist, he cleans my teeth and tells me off for drinking coffee and coke even though I don’t! I’ve been told by someone else though that the acid reflux does this sometimes. I also get excess saliva sometimes and occasionally this will taste of acid, which ends up making me feel sick and with a mouth full of saliva as I don’t want to swallow it incase I am sick!
I try not to think about it all the time though. If I feel sick, I find it helpful to sit by an open door to get fresh air. Othertimes, I read a magazine, listen to music or chat to friends over the Internet. I find it helpful to have friends with CVS too, as they understand what you are going through.
Although my health restricted my schooling, I still managed to pass my GCSEs and I am now doing my A Levels. I had home tuition from year eight until year eleven but I now go to school to do my A Levels, although I am still on part-time home tuition. Although I may grow out of my CVS like some people do, I’ve tried to plan my career to suit it if I still have CVS at that point so I’m planning to be a journalist/photographer as I can then work from home if necessary. When I was younger, I used to worry about my post-16 and post-18 education because I didn’t know how to cope with my CVS but now I know how to cope with it, I feel more positive about the future and I am now looking forward to going to college after my A Levels while doing an online journalism course!
See! Even if you do have CVS, there is light at the end of the tunnel!
Zara wrote this as a young adult:
When I was younger and suffering frequently from CVS episodes with hospitalisation every few weeks, I never dreamt that I would ever be able to complete my education and gain qualifications to get a job in the future.
I was lucky with my mother, as she fought for my right for an education, when the school had almost given up on me. I was missing so much time at school, that some weeks I would only be at school for a few mornings a week, before being sent home feeling ill. After a lot of meetings, I was given ‘special needs status’ on the school register, which is not as bad as it sounds – your friends won’t know unless you choose to tell them. It simply meant that, when I was away from school, ill, or in hospital, schoolwork was sent home.
When I was about 14, I started worrying constantly about how I was going to get through my GCSEs and I am sure that some of my episodes were bought on by my worries. In the end, the school arranged for me to have a home tutor, who came twice a week for two and a half hours each time – not a lot. My friends, back at school, were getting around five hours of lessons a day, when I was only getting five hours a week. However, I learnt a lot quicker with one-to-one teaching, as my tutor was able to focus his attention on me, rather than having to deal with lots of other students. It was hard not seeing my friends from school, but I kept in touch with a few by e-mail, plus I also had friends from the CVSA, who I would e-mail and talk to online.
The next problem was how I was going to get through the GCSEs. After phone calls and meetings, I was helped by the school to apply for a ‘Statement of Education’, which guaranteed my education through my GCSEs and A-Level years. It is not a process for the faint hearted, but it was worth it, once we had dodged the obstacles. I was allowed to take just five GCSEs, as this is the minimum you can take, and the number colleges/employers demand. Because of my Statement of Education and special needs status, I was allowed to take my exams in my own home with an invigilator present. I was also allowed a couple of rest breaks, and extra time if I needed it. The pressure was lifted from me, and my dread of vomiting halfway through my exam, in the hall in front of all my friends, was gone.
Once I had passed my GCSEs, with great results, it was time to do my AS and A-Levels. It was decided that I should attend school for the Sociology course and two AS-Levels, but I did English Literature at home with my tutor twice a week. My Sixth Form also assigned me a “buddy” in each class, who would photocopy any notes I missed.
As I was still suffering with CVS, with day-to-day symptoms such as nausea, stomach ache and reflux, as well as the occasional episodes, I decided to choose a career I could do from home, so I chose journalism. To avoid having exhausting journeys to college I opted for at distant learning course. I have just completed a Freelance and Feature Writing distant learning diploma course with the London School of Journalism; I was very pleased when I passed with an Honours diploma – the highest possible.
I’ve done some other short courses in proofreading and photography and I am currently doing a Teeline Shorthand course at a Pitman Training Centre. This works well because all of the courses are on tape or computer with no set lessons, so I can just go in whenever I feel well enough. Sometimes you just need to think that whatever career you want, there is always another way to get your qualifications, if you are suffering from an illness.
Another reason I chose distant learning and a local college is because I get travelsick. I was advised to take driving lessons, as if you sit at the front as a passenger or drive, you are less likely to feel sick. I had to cancel a few lessons due to my CVS, but I passed, have my own car and feel absolutely fine when I drive or am a front passenger. I also travelled abroad for the first time last year, to Italy by coach – a journey which took 24 hours each way – helped by taking anti-sickness medication, which is something I never thought I would be able to do. I have since been abroad again and I am now planning another trip for next year, now that I know I can rely on my anti-sickness medication for long journeys.
There is no reason you cannot go to university, but there are other options and I chose to take them. A lot of colleges are now linked to universities and offer degree courses. I went from a child thinking that because I had CVS, I would never have any qualifications but, now at 20 years old and with GCSEs, A-Levels, a diploma and other courses under my belt, I was wrong. I thought I would not make friends either, but I was wrong! I have made some fantastic friends at Sixth Form and at college on my photography course. I couldn’t have done all of this though without the support of my teachers, home tutor and consultants. So, you see, there is life after CVS. I still have CVS but I have learnt to live with it.