My cousin died suddenly from meningitis aged 19 — now we’re fighting to stop it happening to someone you love too

Emily Styles died on New Year’s Day 2014 from meningitis B, a disease that can kill within hours. Her family are now campaigning for everyone to have access to a vaccine which could save hundreds of lives every year. Lucy Skoulding explains

Lucy and Emily on holiday in Turkey in 2013

It was 1 January, 2014, when my world changed completely. My cousin, Emily, died very suddenly. I had seen her just two days before, excited about the Christmas festivities and laughing infectiously. She seemed happy and well.

For everything to happen so quickly was excruciating. Death was not foreign to me. I had lost three grandparents in the few years before Emily died. Knowing that someone had led a long, happy life is definitely a comfort when you say goodbye to them, even though losing them remains sad. But losing Emily was very different. Emily was 19 when she died. She had plans to go to university that September to follow her dreams of becoming a special needs primary teacher, she wanted to be a mum, she loved to travel. She had so much to live for and being denied that was unfair.

Emily died from meningitis B, which is the most common form of bacterial meningitis in the UK and Ireland. She went to bed on 30 December feeling slightly unwell, with a bit of a headache, and when she woke up in the morning she collapsed and never regained consciousness. She never had the rash which everyone associates with meningitis, so now I always tell people to learn all of the symptoms and if you are ever concerned about anything, trust your instincts and seek medical help.

Emily’s last day

Emily, Lucy and Julia (Emily’s mother) at Christmas 2013, a few days before Emily died

The period of time between Emily being rushed to hospital in the air ambulance and knowing we had lost her is difficult for me to describe. I don’t think I accepted that it was happening. My auntie Julia, Emily’s mum, rang me on the morning of 31 December and told me Emily had collapsed. I travelled back from a stay in London thinking about my cousin but not thinking we might lose her. She was just unwell, maybe she had a virus or something, but nothing serious.

That evening, I was due to go out with my friends in my home town of Buckingham for New Year’s Eve, and I did decide to go along, albeit feeling a bit distant. My dad called me while I was out to tell me he would pick my brother, Alex, and I up in the morning to go to the John Radcliffe hospital in Oxford where Emily was. That’s when worry started to seep in, but it was slow and gradual. I stayed with my friends for the midnight countdown, I rang my boyfriend, and then I went home.

We arrived at the hospital early the next morning and many members of my family were gathered in a small, private room. The atmosphere was quiet. There was no need for normal conversation, the “how are you?” or “how’s work going?. We all hugged each other and we sat together for a while. Then my Dad came in and explained that Emily had meningitis and they didn’t think she was going to make it. Cries and audible pain filled the quiet room as everyone revealed their sadness for losing Emily, who was loved dearly by everyone.

I spent time with Emily that day. I spoke to her, held her hand, stroked her hair. She looked peaceful, comfy, snuggled up in the way she enjoyed being. Then, at some point, it was time to leave the hospital. I said goodbye to Emily, kissed her head, and let myself cry. We went home and brought Sophie, Emily’s younger sister, with us while my Auntie Julia and Uncle Peter stayed at the hospital. I’m not too sure what I did for the rest of that day. It was later on that Julia and Peter had to give their consent for Emily’s life support machine to be turned off and say goodbye to their beautiful daughter.

Butterflies

In the weeks after losing Emily, I went back to university and immersed myself in my study. This may seem odd because I was away from my family and from Buckingham where I had grown up with Emily, but I also believe it was the way for me to cope. Going through this grief along with the rest of my family taught me that every individual grieves in a different way. Some people need to be alone, some need to be surrounded by others. Some people need to stop and think about what has happened, some people need to busy themselves. Some people talk about it, some people cry, some people don’t. It is so important to give everyone the time and space they need and not dictate how they should grieve.

Emily’s funeral was beautiful and sad. Everyone wore purple, her favourite colour. The church was full to bursting with people who loved her. Emily’s friend sang an angelic song. And as Emily was carried from the church, a butterfly flew up and fluttered above her. Now our family look at butterflies and feel her presence.

The Styles family (l-r) Sophie, Julia, Emily and Peter

In the aftermath of Emily’s funeral my family were, and there are no other words for it, heroes. Everyone got on board with a campaign to get the meningitis B vaccination introduced on the NHS. We started a petition and collected over 5,000 paper signatures before presenting this to Parliament in July 2014. Everyone worked so hard; I personally stood up in front of lectures and went around my university to collect signatures. In 2015, the vaccine was introduced on the NHS for babies, and we are still fighting for it for other age groups.

People have done a lot of good in Emily’s memory, which she would have been so happy about. We have raised over £20,000 for Emily’s fund through events and generous donations. People have completed tough sponsored sporting challenges too. Julia, Peter, Sophie, and the rest of the family have put on successful charity events to raise money for MeningitisNow, such as our recent Halloween Ball. I am so incredibly proud of everyone for achieving this while living through so much sadness.

Now, over three years since Emily died, I still think about her every day and I like talking about her too. I am focused now on two things; remembering the amazing times I had with Emily and raising awareness of meningitis and the fantastic charities related to it through my journalism.

I will never forget my memories of Emily, because they were some of the most incredible times of my life and I would not be the person I am today without them. From the ages of two and three, we would stay with my grandma and she would take us to theatre shows and ballets in London, fantastic restaurants and life-changing holidays. Our trip to South Africa in 2010 was too amazing to describe in words. We stayed in two different game reserves and went on safari, we ate stunning food, we explored Cape Town and we met wonderful people. I will never forget the time that Emily screamed with joy at receiving her GCSE results and the game keepers came running because they thought there was a snake in our tent.

Symptoms of bacterial meningitis

Meningitis is an infection of the brain stem which can cause sepsis (blood poisoning). Most people are familiar with the telltale rash that doesn’t go away when a glass is rolled over it, but there are some more common symptoms to look out for, which include: fever, being sick, a headache, a blotchy rash, a stiff neck, a dislike of bright lights, drowsiness or unresponsiveness, and seizures.

Catching the disease early can be crucial, as the longer someone has meningitis the higher the risk of death or life changing disability.

MenB vaccine

To everyone, I urge you to consider getting vaccinated against meningitis if you haven’t already. It is such a small effort which has a massive impact. You have no way of telling whether you may get the disease, and the risk it carries does not bare thinking about.

Some meningitis vaccines are free on the NHS for certain groups, while you can pay to get others privately. Currently there are three meningitis vaccines offered on the NHS for specific groups of people. The menB vaccine is relatively new — in fact, the UK is the first country to use this vaccine — and it is offered to babies aged eight weeks with a second dose at 16 weeks, then a booster at one year. The introduction of this vaccine has halved the number of infant cases.

MenC is offered to babies at the age of one. Teenagers and first-time university students can also get it as part of the combined meningitis ACWY vaccine. ACWY is offered free to young teenagers, sixth formers and freshers (first year university students) because these groups have a higher risk of carrying the disease and spreading it through being and living in close proximity. Check www.nhs.uk for more information about whether you are eligible for vaccines on the NHS.

If you or someone close to you is in one of these groups, it is highly advised that you take up the offer of these free vaccines. All you need to do is book an appointment at your GP surgery or your nearest Boots pharmacy. Like all other vaccines, they are quick and relatively painless. It is understandable that we all lead busy lives, but please try to find time for this. The thought of other people going through what my family and I have is awful.

If you are not eligible for some or all of these vaccines on the NHS you are still able to pay for them privately. Meningitis B, which took Emily’s life, is £220 in Boots (two doses at £110 each). Of course this is a considerable amount of money but before discounting it, please consider how important this vaccine is. Out of 12 known groups of meningococcal bacteria, menB is responsible for around 90% of meningococcal infections in the UK. In the past 20 years, around one in ten people who have contracted menB have died from it.

If you want to get the menB vaccine but feel like you can’t afford it, think about how you could get around this. Perhaps you could ask for the money for Christmas and birthday presents? Maybe you could put a small amount aside from your pay cheque each month? Try asking your parents if they could contribute; explain how important it is to get it. Get creative about raising the money for it, because this vaccine really is worth finding the money for.

The future

Emily Styles

The next stage for my family is to continue raising awareness of the symptoms of meningitis and the vaccines on offer, helping others to keep themselves as safe as possible. We will carry on raising money for charities such as MeningitisNow and the Meningitis Research Foundation, and for Emily’s Fund as an ongoing tribute to the amazing person she was.

We will always be filled with sadness that we lost Emily, who was a wonderful sister, daughter, girlfriend, friend, cousin, granddaughter and niece but we will never stop remembering what a beautiful person she was. She was taken from us far too early and had so much more to give. Everyone who knew Emily has done themselves proud. My aunt, uncle, and cousin, Sophie, have been through hell and, while life will never be the same for them again, they are showing amazing strength. They have recently moved away from Buckingham to start a new life in another area of England in a stunning countryside house backing onto endless fields and I admire them all. I graduated from university last year and followed my dream of moving to London and starting a career in journalism. We are all striving to lead the best lives we can and to make Emily proud.

It is important for me to tell my story, whether I am speaking about it or writing it down. It is painful and hard and it brings back memories that are really difficult to deal with. But it also brings back wonderful memories of Emily and the fun we had together. Even if just one person reading this article decides to get vaccinated against meningitis, I will feel happy.

To find out more about meningitis B and the vaccine, visit MeningitisNow. Emily’s family are still raising money. If you’d like to support them, you can donate.

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