‘If I can save one life, something positive has come out of tragedy’

Nine people everyday are diagnosed with potentially fatal meningitis. Here two mothers speak about their harrowing experiences with the disease. Catherine Scott reports.

Sara Ellis lost her son Byron at 20 months to menigitis

Just the word meningitis is enough to strike fear and panic in to any parent. Even though most people know some of the symptoms, our knowledge of this deadly disease and the speed of its progression are still inadequate, say those who know first hand.

The Meningitis Research Foundation estimates that meningitis and septicaemia affect around nine people in the UK and Ireland every day. They can strike anyone at any age without warning, killing one in 10, and leaving a quarter of survivors with life-altering after-effects, ranging from deafness and brain damage to loss of limbs. Children under five and students are most at risk, but the diseases can strike at any age and not all forms are currently covered by vaccines.

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One of the main problems is that both meningitis and septicaemia are notoriously difficult to diagnose.

Sara Ellis, from Middleton, Leeds, knows only too well the fatal consequences of missing the signs. She was told her son Byron’s rash was chicken pox. In fact it was deadly meningitis.

Her son, Byron Morgan, contracted the deadly disease when he was just 20 months old.

“Byron was a real live-wire,” says 24-year-old Sara.

“He had been born seven weeks premature by emergency c-section three days before Christmas as I developed pre-eclampsia. He weighed just 3lb 6oz but he was always such a little fighter. Rather than his development being delayed by being premature he seemed to develop quicker than other babies. His speech was amazing. He just loved Kung Fu Panda.

“He was a real mummy’s boy though. He could be quite clingy with me sometimes. He was my world.”

But on the morning of September 5 Byron wasn’t his normal bouncing self.

“He was really lethargic and extremely hot. We sat on the sofa together and watched CBeebies on television.”

When Sara gave Byron his milk he immediately vomited.

“I gave him some water and he drank like he’d never drank before.”

It was then that she noticed a tiny red spot on his neck. Within an hour there were more spots around his neck.

“I thought it might be chicken pox, but to be on the safe side I took him to the local walk-in centre and the doctor their confirmed it was chicken pox and told me to give him Calpol and to keep an eye on him.

“I tried to put it to the back of my mind, but he was so hot and really sleepy.

“An hour later his colour had gone grey and his breathing was really shallow and the rash was everywhere – all over his arms, legs and torso. I knew then that it wasn’t chicken pox and dialled 999.”

The ambulance arrived within minutes.

“I held him as they put drips in his arm but he was so floppy I knew then that it was something really serious. He had developed septicaemia.”

Despite the efforts of the hospital staff at Leeds General Infirmary Byron had passed away by the end of the day.

“They were brilliant at the hospital. They tried for 22 minutes to resuscitate him.

“At one point I asked a doctor if he was going to be okay and he said ‘yes’ and it really got my hopes up.

“But then a nurse told me that it wasn’t looking good. It was devastating to hear, but I was grateful for her straight talking.

“I was on my own as Byron’s dad didn’t manage to get there in time as it happened so fast. Since Byron died on September 5 2012, his family have raised more than £8,000 for Meningitis Research Foundation in his memory.

“It really helps to do something positive,” says Sara.“I haven’t grieved properly yet. I daren’t let myself cry as I might never stop. But raising money for meningitis research has helped me cope, but more importantly I want to raise awareness about the symptoms. I thought I knew them but I didn’t know them all, or that not everyone has the same symptoms.

“I tested Byron’s rash and when I pulled the skin it disappeared so I thought he was alright. If I can raise awareness and save one life then something positive has come out of something so tragic. People always think of the rash, but that can come last, don’t wait.

“I miss Byron everyday. We launched some balloons in his memory to mark the anniversary of his death.”

Another mum who knows just how important it is to recognise the symptoms and take action immediately is Sharon Catt from Mirfield. Her daughter, Maisie, contracted meningococcal septicaemia in December 2009 when she was five months old.

She was in intensive care for 12 days after showing symptoms including projectile vomiting, developing mottled skin and a tiny red spot on her head.

Doctors had to amputate both Maisie’s legs to stop the disease spreading. Maisie, now four, wears prosthetic legs and she and her mum appeared in a harrowing video for Meningitis Research Foundation earlier this year to raise awareness.

“She’s a fantastic little girl,” says Sharon.“I’m supporting Meningitis Awareness Week as everyone needs to know the symptoms so they can seek medical help fast.”

• The Meningitis Research Foundation estimates that there are around 3,200 cases of meningitis and septicaemia every year in the UK. They are easily mistaken for milder illnesses, but unlike a dose of flu can kill within hours and may cause serious, life-long disabilities. As many as one in ten of those affected will die and a third of survivors will be left with after-effects, some as serious as brain damage, amputations, blindness and hearing loss. The charity is using Mengingitis Awareness Week (September 15 to 21) to remind people of the symptoms and to urge new vaccines be implemented as soon as possible.