PERSONAL MENINGITIS STORIES
I am a mother of two girls and a boy. The youngest of my girls is now an angel. In 2010, our lives changed within hours after the sudden death of my three-year-old daughter Chelsea from meningococcal meningitis.
On 8 February 2011, I received a phone call that devastated my life forever. My son, Nicolis, has been diagnosed with bacterial meningitis. He’d woken that morning at college with a bad headache and high fever. The school nurse gave him a couple of Tylenol pills and sent him back to his apartment to rest.
My life changed forever on January 31, 2013 at 8:15 a.m. Before that moment, I was a proud busy mom juggling a career and being a mom and wife with 3 beautiful children – Karly 21, Emily 19, and Zachary 16. The night before, I had received a phone call from my Emily, who was a sophomore at Kalamazoo College - two hours away. She had a headache – a simple headache. I thought she might be coming down with the flu. She thought it was because she had stayed up all night studying for two large exams. I told her to take motrin and get a good night’s rest. I did not know this would be the last time I would ever hear her voice.
On the 25 February 2004, our healthy 20-year-old daughter, Becky, died unexpectedly from meningitis. Becky's death was, and continues to be, an unfathomable concept. We still cannot grasp the idea that she is gone and that we are facing the rest of our lives without her. It all happened so fast!
It was Boxing Day 1989 and our family was attending a friend's outdoor party. Our six-month-old daughter Ashleigh was the star of the day and had her first swim in a pool. Next morning, Ashleigh wasn't acting like herself. She was restless, whining and had a high temperature that wouldn't decrease.
In November 2008, my 20-year-old daughter Jamie, almost lost her life to bacterial meningococcal disease. Jamie was in hospital in Houston, Texas (USA) for over 6 months, where doctors amputated both of her legs below her knees and removed most of the fingers from both her hands.
I was affected by meningococcal meningitis about 10 years ago, when I lost my legs and fingers because of the disease. At the time, I thought that I had lost everything, including my dreams. One day, I met a man who changed my life. He also had artificial legs like me, but he didn’t see it as an obstacle. He worked at a good company, had got married and had a lovely family. He always looked confident.
Elena, Asociacion Espanola Contra La Meningitis, Spain
I was four years old. A healthy and happy child. That day, for the first time, I had a fever and did not feel well at all. But for the rest of the week, no symptoms of my sickness showed.
I started at the University of Leeds in September 2007. I was having fun, had made many friends and was enjoying my first taste of independence. I had danced since I was young and joined a dance society at university. As the semester drew to a close I was looking forward to my 19th birthday in December.
It was Christmas Eve 2005. The windows of Christmas lights flickered. Most of Krakow was preparing its Christmas supper. Andrez Kuczara was in a hospital corridor, his heart tearing with despair. Behind the door to intensive care lay his 8-year-old daughter, Dominika.
Kathryn, Meningitis Research Foundation of Canada, Canada
In 1995, Kathryn was shaken to the core of her existence with the sudden death of her 19-year-old son Michael from meningococcal meningitis and septicaemia. Michael wasn't feeling well on Friday. Four days later, he died. During those sleepless days and nights, Kathryn knew her son had meningitis but was shocked that there was so little information about it.
In March 1990, our beautiful daughter Madeleine contracted haemophilus influenzae just three weeks before her third birthday. We stayed in the hospital for two weeks. After getting better, Madeleine was frustrated and angry because she could not walk, but no one said anything about her hearing or that it could be affected after meningitis.
On 14 May 2007, a beautiful blonde, blue-eyed little boy named Dylan Robert McNeil was born into this world. His smile and love for life was contagious. He was a blessing to so many lives, in many different ways. Dylan loved life, and always had a big smile stretched across his face.
Lilibeth is the first born of Gerry and Rita Lozada. Their story started when Lilibeth was 10 months old back in 1972. Now 41, Lilibeth continues to be a big motivation for the entire family to work harder to sustain her medications and ensure that she gets the support she needs.
On 23 July 2013, my 24 year old brother Tyler Parker died from meningitis. In the week leading up to this day he had been complaining about pain and stiffness in his neck, along with a headache and that he was feeling nauseas and vomiting. He was a stubborn guy and rarely went to the doctors but in the first part of that week he went to the doctors to get checked out.
Viv Bell talks about contracting meningococcal septicaemia in May 2008. Viv was in a coma for 12 weeks and lost both legs from the knee down, as well as her fingers and the use of one hand.
It was the 10th of January 2011 and I received a phone call at 3pm from the nursery saying that Loken had a temperature and that he was a bit sleepy. I agreed for the nursery to provide him with some Calpol.
In June of 2012, my daughter Kimberly Coffey died from meningococcal disease - a vaccine-preventable disease. The reason simply being that we didn’t have a vaccine then for the specific serogroup of meningococcal disease she contracted. If there had been a serogroup B vaccine in 2012, I believe my then 17-year-old daughter would be alive today. She was up to date on all of her vaccines, including meningococcal disease, but the current vaccine did not protect her against serogroup B. It only protected her against four serogroups – A, C, W & Y.
My name is Nathalie and I live with my family in Beirut, Lebanon. Alexandra, my daughter (seen on the right), is 4 years old. She has had her vaccines against meningitis type A, C, W but she contracted the Type B. Alexandra was a perfectly healthy little girl until that Saturday. She woke up on November 19th 2016 with a little fever. I was felt something was not good I don't know why.
Have you heard of recurrent meningitis? Neither had I until April 2016 when I got the official name of my rare form of viral meningitis originally diagnosed as recurrent viral meningitis. This is a disease we need to know more about, and we need research to get that.
Cameron was 5 ½ months old when he developed pneumococcal meningitis in a remote country town in Western Australia. After being unwell for several days with a fever, general lethargy, a disinterest in feeding, diarrhea, vomiting, a distinctive cry and arching of his back, Cameron lapsed into a coma and seizure. Cameron was initially misdiagnosed with a bowel infection but after visiting 1 doctor’s surgery, 3 hospitals, 4 ambulances, 2 Royal Flying Doctor flights and 3 emergency rooms, he was admitted to an ICU and diagnosed with pneumococcal meningitis.
My scars are my story and I am proud of them. I embrace the curious stares of strangers. Most of all, I hope they stare at my art and see that I am following my dreams.
In August 2016, at age 30, I had reached the peak of my career. I landed my dream job travelling around Australia for work in aged care. I was happy. I was independent. But my life was turned upside in a matter of hours.
This is the story of my son Mathias, who was just two weeks short of turning 18, and it started with a tick bite on his stomach on a Wednesday morning in July 2019 while we were playing tennis. Nothing unusual to happen in Sweden during the summer so we just had to keep it under observation.
Around 5pm that evening I laid Sage in his Rock and Play, gave him some Tylenol for his fever, and made our other son, Skye, dinner. While Skye was eating he tried to get Sage's attention, but Sage stared back at him blankly. Skye then asked me why Sage wasn't smiling or laughing. My heart sank; I knew something was really, really off.
Some days are easier than others for Siobhan and Noel Carroll, but there is never an easy day. Siobhan and Noel's lives changed in a heartbeat when their eldest child, Aoibhe, passed away on 2 April 2008.
Courtney and Bryan, Ryan Martin Foundation, USA
My son Ryan was born on 10 August 2006. He was a healthy 8lbs 1oz baby. He was so funny, so cute, with big blue eyes and blonde hair. He was perfect. I had a beautiful baby boy for 14 months. On 27 October the next year, we were at my middle son’s last soccer game. Ryan was running around playing with soccer balls, eating snacks, drinking his juice, riding on his daddy’s neck, smiling and laughing. It was a great day. The weather was perfect. We were doing the same thing we do every other night – playing, walking, running, eating dinner. Normal things.
Bonnie had been sick for a couple of days around Christmas of 1990. We went to her doctor and he thought she had the flu. He prescribed an antibiotic. She seemed to be getting better, but a few days later Bonnie came home from school feeling very ill. I called the doctor and he thought she might not be over the flu, so he prescribed another antibiotic. We started that, but within a couple of days, she was even sicker.
Bev and Riley, Meningitis Now, United Kingdom
Riley was teething at the time he contracted meningitis so his initial loss of appetite and irritability was not unusual. He seemed fine in the morning but by lunchtime was unsettled and had a slight temperature. His mum, Bev, became more concerned when he didn’t want his 3pm bottle and by 5pm, Riley was grizzly and unhappy and didn’t want any food. As the day progressed his condition got worse, with projectile vomiting and diarrhoea.
Jimmy and Veronique Meningitis France Assocation Audrey, France
On account of our ignorance about meningitis, we lost our daughter Audrey. She was 12 years old and died from meningococcal C meningitis after 24 hours of pain, vomiting, fever, skin discolorations (purpura) and sensitivity to light.
Our youngest son, Ondra, who is now 5½ years old, became seriously ill with pneumococcal meningitis at 22 months of age. We can say that he was fortunate because he survived, yet he will bear one the consequences of this insidious disease all of his life – hearing loss
I contracted meningitis and meningococcal septicaemia C when I was 40 years old. I woke early one morning with intense pain in my lower back. It was preventing me from sleeping. I told myself it was just back pain from working long office hours, took some Panadol and tried to go back to sleep.
My experience with meningitis has had a life-long impact. When I emerged from my coma, I was Deaf. And since the placement of the shunt in 1971, I have experienced three other comas and associated surgeries related to shunt issues.
In May of 2013 I was diagnosed with Meningoencephalitis and already had Sepsis when I arrived at the hospital just 2 days after getting an initial fever. The doctors thought I initially just had the flu. After suffering through 2 comas and a seizure, I am still recovering today, but made it my goal to make a difference and to help raise awareness and money for this disease.
On the 2nd of January 2017, I woke up at around 5am with uncontrollable, whole body convulsions. Although I couldn’t stop shaking, I passed this off as just being cold, put 2 more duvets on me, and went back to sleep. This should have been my first warning sign.
One sunny morning, I went to the post office and left my fiancé, Jane, making breakfast. She called me 20 minutes later with a very weak voice saying that she had collapsed on the floor and to get home quickly. Neither of us knew what was happening to her, or how our lives were about to take an unimaginable change for the worse.
My daughter MaryJo was a beautiful, multitalented, vibrant and well-travelled young woman when she contracted meningococcemia just 8 days before her 16th birthday in July 2000. Early Saturday morning, MaryJo felt sick – she was weak and had a sore throat. I’m a registered nurse, so I examined her throat and didn’t see anything unusual – no redness, no swelling, no blotches – but she did feel warm.