By Christine Townsend
At one point or another, every parent in the world makes a decision they regret. Who could have predicted that an attempt to protect my daughter from cervical cancer via HPV vaccination would turn our lives into a constant battle to regain her health and maintain her right to an education? If we had only known……
Allow me to introduce my daughter, Chelsea Sascha Townsend, of Peterborough, Cambridgeshire, UK. This is her story.
Before Chelsea had the GlaxoSmithKline Cervarix injection she was a very happy, outgoing, confident young lady who, from starting nursery at the age of two to having the first round of vaccinations at the age of twelve, had had just one day absence from school due to illness. Chelsea was such a determined and confident young girl that, once she started secondary school (making the move with none of her friends from primary as they all had places at a different school) was when others began to notice that she was confident, very intelligent and always stood up for herself, she would go out of her way to prove to them that she was the stronger person. She would come home with tales of being told she was ‘weird’ and her response was, ‘if they want weird, then I’ll give them a reason to call me weird’ and would set off in the mornings with the left side of her hair in a plait and the right side either down, in a bunch, a mass of curls or dead straight. Always pushing boundaries; that was my daughter. She had many friends at primary school and during her first year of secondary would always be out on sleep overs, taking bike rides, reading for hours on end and even began to go to listen to local bands play. Chelsea had the respect of her peers.
After receiving the first injection – my daughter was part of the first year of the HPV vaccination programme being administered (her dates of vaccination were November, December 2008 and May 2009) – Chelsea began to get severe headaches which were treated with migraine medication which then led to her having what she described as ‘absences’ whilst at school: she could be in the middle of a lesson, walking along at break time, sitting down eating lunch or have someone talking to her and yet she couldn’t hear a word that was said to her and felt as if she was ‘not in her head’; she was referred for investigation for possible epilepsy. Naturally, the epilepsy diagnosis was incorrect.
Over the next couple of months and the subsequent doses of ‘Cervarix’ being administered, Chelsea began to suffer from aching joints, more severe headaches and tiredness. She began to miss a couple of days of school a week due to the headaches, nausea, aching joints and by the time she was approaching the end of year eight she was missing whole weeks due to all the previous side effects with the added issue of extreme exhaustion now beginning to affect her. She also was experiencing loss of short term memory, lack of concentration and visual disturbances.
Over the summer holidays of 2009 Chelsea began to suffer from complete exhaustion – she would sleep in later and later during the day and would have no energy to be able to go out with friends. She changed from an outgoing, popular girl, who was always laughing, to a very introspective and unconfident girl with no interest at all in life. Her appetite began to diminish and she started to lose weight. By the end of the summer my gorgeous daughter was virtually bed ridden. She now slept for at least 20 hours a day and, if she felt well enough, could join her brother and I for dinner but would have no appetite and would tell us that the smell of food made her feel sick. Being a single parent I still had to go to work every day and so Chelsea was left at home alone, sleeping the days and nights away. Occasionally she would have the energy to get out of bed and watch a couple of hours of TV but, after a while, the colour would drain from her face and her eyes would glaze over as total exhaustion would once again take over.
This is how Chelsea’s life was lived for the next eighteen months, bedridden for weeks at a time with only the occasional ‘good’ day when she had enough energy to get out of bed – she became even more insular, struggled in social situations with people she had known for years and, on good days, refused to venture out of the house in case people from school saw her and called her a ‘fake’ – as they had been doing through social networking sites – rumours even went around that she was absent from school due to pregnancy: she had been seen taking her little cousin to the local park (my ploy to get her out into the fresh air for a few minutes). Finally she was given the diagnosis of CFS/M.E in late 2010 but our GP was and still is refusing to entertain the idea that her illness began after the first Cervarix vaccination. Due to the diagnosis Chelsea was awarded three hours of tuition a week but the two tutors she had allocated to her by the Local Education Authority were not particularly understanding of her needs.
In addition to her diagnosis of CFS/ME, Chelsea has also been diagnosed as having an underactive thyroid gland and is now taking the medication Thyroxin – this diagnosis was given in 2011. There is no history of this condition in our family.
Thankfully, in May of 2011, a wonderful tutor was then employed by the local authority and, with her help Chelsea’s confidence slowly came back. I was also taking her to weekly appointments with CAMHS – Children and Adolescents Mental Health Service where she was seen by a psychologist who prescribed anti- depressants, which Chelsea stopped taking after three months as she said they hadn’t changed anything about the way she felt, and gave her advice on how to get her sleep pattern back to normal (by this time she was, on some days, awake for a few hours at a time, but at night time when the rest of the house was asleep (further exacerbating her feelings of isolation and loneliness) and a psychotherapist for CBT (Cognitive Behaviour Therapy) who discussed planning and pacing with her. It was awful having to drag her to appointments when she felt that the CBT was accomplishing very little and, in her words, was just ‘a man sitting there lecturing me’. However, now that she is studying Psychology at A Level she can look back on her experience and see that CBT really did help.
We had weeks of harassment from the Local Education Authority’s Attendance Service, who seemed to view Chelsea and I as a ‘soft touch’ – because I teach at the school she attends. To the point where, during one meeting, the LEA’s head attendance officer leant over to my daughter and threatened ‘do you want your mum to go to prison Chelsea?’ I’m sure I don’t have to outline how angry I was at this comment and the rather insulting reply I gave. A different tack was tried – they suggested that I make Chelsea come into school when I did at 8am to ensure I woke her up and got her out of bed as was my duty as her parent…I am afraid that is the point when I broke down, starting Chelsea off crying too (we both cry when we get angry or realise that an injustice is taking place). My response was something along the lines of: ‘I doubt that you have ever had to try to wake up your child that is a shadow of their former self, trapped in their own body. They can hear you, but cannot open their eyes, let alone lift their head from the pillow. Have you ever watched your child’s lips move in response to you asking them a question but no sound comes out because they do not have the energy to even form a whisper? Have you ever arrived home hours later and have your child repeat back everything that you said to them that morning, proving beyond a doubt that opening their eyes, responding and getting out of bed are a physical impossibility? Have you ever seen a grey pallor take over your child’s skin, making them look waxen and worn down? Have you ever looked into your child’s eyes and seen nothing there? Eyes that are completely devoid of life? Eyes that appear to be black and dead?’ The woman did not bat an eyelid and told me the date and time of the next meeting they had scheduled (during one of my free lessons), by going into the school office and looking at my teaching timetable!! They had not reckoned on the both of us refusing to bend to their bullying tactics and, after I had written and sent a four page letter to them outlining each and every way they had broken the law, acted in an underhand manner and, when we openly challenged them to take us to court, did they finally acquiesce to the fact that Chelsea was the only person who knew how her body worked and was the best person to decide when she was able to attend lessons.
When her GCSE results were given out in August 2011, she had managed to gain five A’s, two B’s and a BTEC distinction star in Science. Chelsea is now working on her A levels. Sadly her M.E seems to have worsened over the last year and she is only able to attend school for either two half or one full day and has had to drop one subject but, despite this, she is getting A grades in the two subjects she has continued with and is planning on taking an extra year to complete an extra subject and an EPQ (Extended Project Qualification) in order to gain entry to university.
Chelsea has worked hard to rebuild her confidence, after a long battle and many letters she is now sent work from her teachers that she might have missed and, thanks to guidelines from the AYME website, the school are now aware of their legal responsibility as to the provisions Chelsea is entitled to due to her illness. It has been a long, hard slog to get to this point and it still isn’t over as she faces a fight to get to university and embark upon her chosen career path whilst battling every day against her own body that has been irreversibly changed by GlaxoSmithKline’s HPV vaccination, Cervarix.
Many times over the last few years I have said to Chelsea that if I could take away her suffering and have it myself, then I would, as I am sure all mother’s would – each and every time my daughter has responded with, ‘Mum, there is no way I would want you to have to feel like this every day, I wouldn’t even wish it on my worst enemy’…just sitting here typing these words has brought tears to my eyes and a lump to my throat!
In my role as tutor to students in Year 7 and 8, I make a point of always mentioning Chelsea’s case to the girls a few months before they have their vaccination, hoping that they will relay my daughter’s story to their parents. However, I now feel that this is not enough and that I will be failing in my professional ‘duty of care’ if I do not provide the parents of these girls with recent literature about the adverse reactions these vaccinations cause. I will be approaching the principal of the academy in which I work in an attempt to convince her that as an establishment responsible for the well-being of young people, we have a moral and ethical obligation to provide parents with information both supporting and discrediting the HPV vaccination programme. If I can prevent just one young girl from having her life irreversibly changed, then the guilt I feel over the gamble I took with my daughter’s health will be, in a small way, alleviated.
Having now met and spoken with other mother’s whose daughters have also had a reaction to Cervarix; it is comforting to know that we are not on our own. We know our daughter’s better than anyone and know that we had healthy, bright girls prior to this vaccination and, as if overnight, their lives changed and we have had a constant struggle ever since then. However, the truth will out and those who have denied us help, respect and common decency will have to answer for their actions one day. If I could turn back the clock I most certainly would.