Personal Stories
Meningitis UK's vision is a vaccine to eradicate all types of meningitis and septicaemia. The driving force behind our work are the thousands of families who we represent who have experienced the terrible loss and suffering these diseases cause.
Meningitis UK Chief Executive's Steve Dayman lost his 14-month-old son Spencer, in November 1982. In those days there were no charities representing meningitis and virtually no public information about the diseases.
For the past 24 years, Steve has dedicated his life to creating a better understanding of meningitis and septicaemia and has encouraged hundreds of families who have experienced the sorrow of losing a loved one to the disease to support the cause. Many families find it very comforting and helpful to do something positive and for most people being actively involved in the meningitis cause has for a time filled the emptiness they feel. If we all do what we can, together we can make a difference.
Here are some of the stories and faces which highlight the urgency of our mission to find a vaccine.
Spencer Dayman
Aged 14 months
It was the 1st November in the early afternoon when my wife Gloria called me at the office of the road haulage business that we used to run, to say our little boy Spencer was not very well. He was not his usual self when he awoke from his midday sleep. Normally he would stand in his cot and shake it to try and get out. This time he was lying still and although awake, he could not lift himself into a standing position.
Gloria called our doctor, who suggested she gave him Calpol, although he did not have a temperature. She called the doctor again at 4pm, by which time I had decided to go home early.
The doctor came out at 5pm and examined Spencer, he said that Spencer should go to the hospital just as a precaution. Gloria wrapped Spencer in a blanket and sat in the back of the car with him while I drove.
We arrived at the hospital in Bristol at 6pm, it was about an hour before Spencer was examined by a doctor. We then noticed a small 'pin prick' rash on his stomach. We were told that Spencer was suffering from suspected meningitis. I remember thinking "Thank God they know what's wrong with him".
Spencer was eventually moved to the Intensive Care Unit at 12.30am. During the following hours his heart stopped, the doctors managed to get it going again, but his fight for life had only just begun.
All the next day we were praying he was going to be alright, but at 7pm, just 24 hours after being admitted to hospital, his body was so overwhelmed by meningococcal septicaemia, his heart could not take any more and his breathing stopped.
I held Spencer in my arms, the devastation and emptiness is something I can never forget. Only parents who have been through a similar experience can imagine the pain this terrible disease causes. Spencer's death has completely changed my life.
Steve Dayman (Spencer's Father)
Callum Adamson
Aged 10 weeks
It was 4.30 in the morning on 30th December 1999, when Callum woke up for his early morning feed then he went back to sleep again. As normal he woke again at 9.30am. This time instead of smiling as he always did because Callum was a very happy, contented baby he was crying and seemed very unhappy. He only took half his bottle and I was unable to settle him down. I nursed him in my arms because every time I went to put him down he would just cry. This was totally out of character as Callum was not a whingy baby and he had been winded and changed, so I knew it wasn't that.
It was about 11.30am when I decided to call the doctor. The doctor told me to bring him down straight away, because by now I could see that his condition had deteriorated and he was burning up. The doctor checked him thoroughly and diagnosed an ear infection and prescribed antibiotics and liquid paracetomol for his temperature and we went back home. In the afternoon I went shopping with James, my partner and Callum who was asleep in his pushchair. When we arrived home Callum was still sleeping and we thought this was the best thing for him. When I did wake him he was floppy with a staring expression and his hands and feet were cold.
At about 5.45pm we tried giving him a bottle but he would not open his mouth and his lips were blue. This was when we realised something was seriously wrong. James rushed Callum straight back to the doctors. He had now started to develop a rash and the doctor gave him a penicillin injection and called an ambulance. He was admitted to hospital about an hour later. His little body was so overwhelmed by meningococcal septicaemia that there was nothing the doctors could do to save his life.
This terrible disease took our baby son Callum at 11.20pm. James and myself were at his bedside cuddling him and he gripped our fingers. During the dark days that followed that still seem like a grey mist we tried to come to terms with what had happened to our lives - so many feelings. Why us?
Even today we look for answers that nobody knows.
Lisa Cook and James Adamson (Callum's parents)
Ashley Scriven
Aged 7
Ashley was a typical fun-loving mischievous boy who filled the hearts of so many people with so much love. I am so proud and honoured to be his mum. He was a ray of sunshine who just glowed with love and gentleness.
On 29th March 1995 he was sent home from school early with a headache and feeling sick. Ashley suffered from childhood migraines so this wasn't uncommon for him and his cousins had recently suffered from flu, so I thought he could possibly be going down with it too.
He lay on the sofa until early evening - he had been sick but said that he was feeling much better. He asked for a hot cross bun which he ate and then went to bed. He was sick later that evening. I felt it was my fault as I let him eat the hot cross bun.
I checked on him when I went to bed and he seemed settled. I woke in the night and went in to him - he said his head was feeling better but his legs ached. I remember saying: "It must be that flu bug Ash". I gave him a paracetamol, he settled and I went back to bed.
The next time I woke at about 5am, I heard him making strange noises. I rushed in, he was obviously having trouble breathing and I couldn't wake him - he was unconscious. I struggled with him to the phone and called the doctor and an ambulance.
I was screaming for help. Craig my other son went to get a neighbour who gave him mouth-to-mouth until the doctor and ambulance arrived. I can never describe that feeling.
The doctor arrived within minutes and told me to get ready to go to Bath's Royal United Hospital, he thought Ashley had a blockage. The ambulance crew stabilised him on a ventilator and took him to hospital. My dad drove me - by the time we arrived Ashley had developed a bruising rash. By this time it was clear to the doctors what was wrong, but I still believed that they would save him.
After several hours of treatment and tests the doctors told me that Ashley was so overcome by meningococcal septicaemia that there was nothing else they could do. I never got to say goodbye and I struggle to live with the fact that I never knew he was so poorly. My family and I now devote as much time and energy into fundraising in memory of Ashley - the little boy who we all love and miss so much.
On his birthday every year we hold tribute evenings, which are a huge success, we have lots of fun including guest artists, so far we have had the Fab Beatles, Robbie Williams Tribute, Mick Hucknell Tribute and Rock n' Roll evenings. We also have an annual football match.
Tracey Cox (Ashley's Mum)
Corrine Rae Hill
Aged 11
The 2nd April 2001 started like any other Monday morning, but turned out to be the worst day of my life. Corrine appeared a little quiet and she complained her knee was aching when she got out of bed for school, but I didn't think too much of this because she had been delivering leaflets with her Dad the day before. Just a few hours later Corrine was sent home from school, my sister collected her because I was working but she called me straight away. Corrine went straight to bed complaining of a headache and flu like symptoms.
When I arrived at my sister's, Corrine heard me and came down stairs, she was very pale and said she felt very weak. I called the doctor and made an emergency appointment. When we arrived at the surgery Corrine vomited and there were traces of blood in it. The doctor said this was unusual for a child and so sent her to the local hospital for tests.
When we arrived at the hospital I had to wake Corrine because she had fallen asleep on the back seat of my car. Corrine managed to walk to the casualty department with my support, but slumped in a chair as soon as we were inside. The nurses immediately came rushing over, took her into a room, took off her clothes and then connected her to some machines to measure her blood pressure and pulse. She was seen by a couple of doctors and then the worst moment came - the doctors said that they suspected meningitis. I was uncontrollable. I was asked if I wanted to call anyone. I telephoned my sister and Corrine's Dad.
I sat in the office and I could hear her having seizures. The nurses came in and asked if we would like to see Corrine before she was sedated, as she was going down to x-ray for a CT scan. I was very scared because there were crowds of doctors and nurses. I don't know whether Corrine knew I was there. Her face was purple.
I was being kept informed from time to time and was told that Corrine was very poorly and then the fatal blow that she may not survive. My head was reeling and I was screaming inside "not my baby".
We were taken to the CT scan room, I saw the consultant standing at the end of the corridor with Corrine's nurse, and I knew then that my little girl had died. The consultant broke the news gently and told me that Corrine had suffered a cardiac arrest and that they were unable to resuscitate her. We went to see Corrine, my beautiful girl looked so peaceful.
All this happened so quickly. The consultant told us that he had seen many cases of meningitis, but never had he seen one that had taken over so rapidly. I still can't believe my little girl won't be coming home again. I miss her so much and her sister Jodee has lost a great playmate. All this has had a devastating effect on my family, we feel as though our hearts are breaking. Corrine was a very bright girl, she loved music and her computer and I know she would be delighted that her story is on the internet.
We would like to thank Steve Dayman and everyone at Meningitis UK for all their support, help and understanding.
Jackie (Corinne's mother), Jodee (Corinne's sister) and all the family
Martin Finch
Aged 14
This artist's impression of Martin was drawn whilst on holiday in Minorca in 1998 when he was thirteen. His reward for sitting still and going first, was a bottle of San Miguel.
We were confronted with meningitis very suddenly with the loss of our 14-year-old son Martin on the 8th December 1999. The shock of Martin's death affected a large number of people in many different ways. In some respects it was a very public event. Martin died of meningococcal septicaemia. Both parents and pupils at the school he attended were immediately concerned about the possibility of Martin having passed the bacteria on to them. The Headmaster, his staff and the local health authority alleviated their fears. The local papers and television stations also covered the story.
During this time we met Steve Dayman whilst searching for more information about meningitis. Steve, with his easy style of communicating showed us by example that there was a route away from our despair which could be rewarding and therapeutic. By this time the family felt compelled to do something to mark the wonderful life of our son, all be that it was very short and his potential unfulfilled.
It was some six months later before the family was able to take the first tentative steps towards raising funds and improving awareness about this vicious disease.
It was our brother-in-law who suggested holding a sponsored bike ride and we added in a barbeque to reward the riders after the event. Unfortunately the bike ride was cancelled due to the fuel shortage that year but we went ahead with the barbeque anyway. Over 200 people came to our home and we raised over £2,500. The bike ride went ahead later that year and more than thirty people rode over 500 miles and raised another £4,500.
The barbeque was such a great success that our friends asked us to repeat it; so we did the following July, over 225 people came this time and we raised another £3,000.
We then held our first Christmas Gala Ball for 255 people at a local hotel and raised the staggering amount of £7,000. We have also try to promote awareness at all of these social events.
The money from the Ball and last year's barbeque is funding two pieces of equipment in the Spencer Dayman Meningitis Laboratories, which carry Martin's name.
The Martin Finch Memorial Fund was formalised in March 2001. The Fund's aims are to promote meningitis awareness locally, raise funds for the fight against meningitis, try and prevent other families from having to suffer at the hands of meningitis and to promote fun and enjoyment whilst doing so.
The fund and all of its work, plus the website are dedicated to the life and memory of our much-loved son Martin Luke Finch.
The family is determined to continue working in Martin's name for the discovery of a vaccine that works against all strains of this dreadful disease. For more information visit our website
Ray and Jackie Finch (Martin's parents)
Lisa Richardson
Aged 19
The day before Lisa became ill we were at the Metro Centre in Gateshead, doing some Christmas shopping. Lisa wanted to get three presents, one for me, one for her dad and one for her brother Mark and a birthday present for her boyfriend Alister. She was excited about going around the shops she loved to buy things for other people. We had a brilliant day, but little did I know it would be the last time we were ever going to do it. After we got home Lisa started to get ready to meet Alister - they made a lovely couple.
The next day Lisa went to work - she worked at ASDA in the Metro Centre as a checkout operator. She finished work at 6pm and called at the local shop on her way home where she had a chat with her dad's cousin Julie. Then it was off to see Alister again. This time she took her brother Mark with her although he did not really want to go as he is quite shy, but she pestered him so much that he decided to go. It was 9pm when the phone rang. It was Mark to say that Lisa was not feeling very well and could we go to Alister's house to pick them up.
When we got there Lisa was lying down. She said she was cold and had a headache, but when I felt her brow she was very hot. We put her in the car and she started to vomit so we took her to casualty. They gave her something to bring her temperature down, they thought it was a viral infection and gave her some antibiotics. She came home and went to bed.
The next morning she was unable to stand up, she was still being sick and she had diarrhoea so we called the doctor who said to take her back to the hospital. I brought her down stairs and was just putting my shoes on and her dad was getting the car, when Lisa collapsed in the hallway. Her dad called an ambulance and they came in minutes. By then a rash was developing around her mouth. Then I heard the paramedics say they could not find a pulse.
They put Lisa in the ambulance and told me to sit in the front next to the driver and took us to the hospital. Her dad followed behind in the car.
When we arrived Lisa was taken to the Emergency Room and we were shown to the relatives room. A nurse said Lisa was very poorly and she would keep us informed and that they were doing all they could.
It was an hour later when the nurse and a doctor came back to see us and I could see by the look on their faces that it was not good news. They said that they were so sorry but Lisa had died of meningococcal septicaemia. I remember crying "no not my baby". Her dad and I just hugged and cried, we could not believe she was gone. Then we had to tell the rest of the family that she was dead. It was the hardest thing we have had to do. Her brothers Mark and David were devastated, we could not see a future without her, we cried like we were never going to stop. Our hearts were broken, life was never going to be the same again for us, our family is broken. You never think it is going to happen to you but it goes to show that it can happen to anybody.
When Steve Dayman read Lisa's story he sent the most moving letter offering his support which helped us through a very difficult time. He put us in touch with a couple who had suffered the same tragedy as us. They have been a great support and we have become good friends.
We have been fundraising since Lisa's death and we will continue to do so in the hope that one day this terrible disease can be wiped out. Not a day goes by that we don't live that last weekend and wish we could change things, All we have are a lot of happy memories. We visit her grave everyday and ask why she had to die and leave us lost and broken-hearted.
We miss you so much and can't bear life without you. Good night and sleep tight our angel. Till we meet again, love you always Mam, Dad, Mark and David.
Linda Richardson (Lisa's mother)
Kevin Leaver
Aged 50
On the first day of the new millennium my husband and I walked on Ilkley Moor. It was a beautiful clear bright day and we could see for miles. We had lots of plans and were looking forward to the increased freedom we would have - Claire was in her first year at university and Laura was coming up to her GCSE's.
Little did we know that just days later Kevin would die from meningococcal septicaemia, only five hours after being admitted to hospital.
Despite having the rash all over his body, terrible stomach pains and very cold hands and feet plus 'flu-like' symptoms, meningitis was not immediately diagnosed. By the time he was taken to hospital later that morning he was desperately ill, watching him deteriorate over such a short time was heartbreaking. When the crash team came in to try and resuscitate him I had to take the girls out, we couldn't watch, neither could we take it in when the doctors told us that he had died.
Kevin had taught at the same school for 28 years and was a talented teacher. The whole community was shocked beyond belief. Even now many of us are nowhere near coming to terms with his death.
In the dark weeks that followed, Steve Dayman supported the three of us by visiting, writing, telephoning and putting us in touch with other people who had suffered the same tragedy - you don't realise how many people there are out there suffering like you. We felt terrible guilt thinking that there was something we should have done, the three of us for different reasons blamed ourselves.
Steve reassured us that we were not to blame and that the disease can be so rampant when it takes hold that often there is little anyone can do.
By supporting the work of Meningitis UK we want to try and reduce the number of people who are suffering as we are.
On January 7th I lost the love of my life, my daughters lost a father who always had time for them and the school lost a very special teacher. Our lives changed beyond belief the day Kevin died, it was a life we all loved so much.
All this happened at the height of the Meningitis C vaccination programme and at a time when the number of deaths from meningitis was at a 50 year high. There is still a lot to do on both the research and education front. Meningitis UK is making a significant contribution to achieving both of these objectives.
MeningitisUK · Registered Charity No.1076774
