My parents know just what Matt Dawson faced: I too survived meningitis but at a price
Coleraine woman Louise Greer beat the odds when she survived the illness aged two, like rugby legend Matt Dawson's son Sami. Now, she is preparing to compete in this year's Paralympics despite losing limbs to the condition.
Louise Greer lost her lower legs and part of her left arm to meningitis when she was just two years old. The Coleraine woman, now 18, suffered the vicious B-strain of the disease, and her parents were told she was unlikely to survive.
And the heartbreak suffered by Louise's parents is echoed by that of rugby ace Matt Dawson, who said last week that he feared his two-year-old son Sami might not survive a bout of meningitis.
Sami was put into an induced coma and was in a critical condition for weeks as Matt (43) and his wife, Carolin (30) prayed for a miracle. Thankfully, he has now pulled through.
The couple's agony as they waited helplessly to see if their son would recover was compounded by reading about the recent death of two-year-old Faye Burdett, from Kent, who passed away on Valentine's Day after an 11-day battle with meningitis.
And the two high- profile incidences have reignited the debate around the availability of a meningitis B vaccine.
Matt has called for the programme to be extended to include children, like his son Sami, who just missed out receiving the potentially life-saving jab.
Louise says: "Mum and dad know exactly what Matt Dawson and his wife went through when their son Sami almost died from meningitis. When it happened to me, not many people knew much about the warning signs. There is more awareness now but still not enough. The case of little Sami Dawson is a case in point."
Of the approximately 2,400 people who contract meningitis in the UK every year, around 300 die and hundreds are left with permanent disabilities.
The disease can kill in as little as four hours and when Louise visited hospital for a routine check-up aged 10, doctors admitted they were amazed that she had pulled through.
The keen equestrian and all-round daredevil went on to represent Coleraine at the regional RDA (Riding for the Disabled Association) dressage championships, and has been selected for the 2016 Irish Paralympics team.
She also fronted a province-wide campaign to warn parents about the symptoms of meningitis and, at 17, became the youngest person from Northern Ireland to be named on the Queen's New Year's Honours List, for her ambassadorial services to the Meningitis UK charity, now merged with the Meningitis Trust to form Meningitis Now.
Louise has also visited Parliament to ask MPs to make the meningitis B vaccine available to all children. The vaccine is currently available on the health service only for babies aged two months, followed by a second dose at four months and a booster at 12 months. Parents who wish to have older children vaccinated must pay privately, although a worldwide shortage of the vaccine Bexsero means stocks are very low. Manufacturer GlaxoSmithKline hopes to increase UK stocks by the summer.
Meanwhile, more than 640,000 people have now signed a petition set up to make the vaccine available to all children until at least 11 years of age. The campaign was launched by Lee Booth (44), from Newcastle-upon-Tyne, after one of his two young daughters was deemed too old to have the vaccine on the health service.
'Your world does end for around a year, but life goes on and gets better'
Louise is supporting the campaign from her new base in Gloucester. She moved last October to study business at university there, leaving her parents, Raymond, a retired security guard, and Gwen, a cook, and older brother, Jordan (22), at home in Coleraine. Based in student halls of residence, Louise leads a normal life with the help of a prosthetic arm and legs, a mobility scooter and a wheelchair. She says:
As far as I know, they thought I had chicken-pox when I was rushed to hospital when I was two, and then my body started to shut down. I was near death at one point; they said they'd take it half an hour at a time.
Even now, when my parents are telling the story, they are shaking. They couldn't get over the shock of what happened. It was so sudden and scary. The doctor told them things looked bad and I'd have to have the amputations to save my life, and still may not make it.
My brain was getting all the blood to my organs and my legs and my left arm were dying and infected. I was in hospital for months and when I got home, apparently, I didn't want to sit still. I was a very active child and I didn't know any different to not having my lower legs and left arm.
Kids at school and at North Coast Integrated College were okay. The only comment I got at primary school was from one kid asking why I had no shoes on - my prosthetics, that is. I didn't feel any different to anyone else: I was just a normal kid playing. It was the parents I'd get more of a reaction from. I remember playing with a kid in a pool on holidays and the mother coming up and taking her away. And a couple of years ago, when I was fundraising for the RDA (Riding for the Disabled Association), a woman with a pram told me to get out of the lift and walk up the stairs.
I took it as a compliment to my prosthetic legs; I must have been walking well that day.
Getting new prosthetics has always been exciting for me - it's like getting new shoes. I have two prosthetic arms, one in a relaxed posture, and the other for riding the horse - it holds the reins in a grip and the wrist moves.
I've been horse riding since I was 10 or 11. I always wanted to and the physio recommended it for building up my core strength. I got a palomino horse called Tiger, and started riding with the RDA, winning medals for dressage.
I ride without my prosthetic legs. I was fed up falling off and getting hurt and dragged along when I couldn't get the feet out of the stirrups, so I just leaned to balance on the horse without them.
Going out to dinner once, someone asked me if I wanted a jacket to cover up my arm. I said, 'why would I?'
I got a double A in my A-levels and I'd like to do a masters in a course which relates to equestrian performance after my degree.
If anyone ever said to me, 'you won't be able to do that', I said: 'watch me'.
Getting the BEM (British Empire Medal) on the Queen's honours list was amazing. I was presented with the medal at a ceremony in Hillsborough last March, then we got invited to a garden party in London. I got pretty close to the Queen and she waved at me.
Now, I'm settled into university, but I don't have time for boyfriends. I don't know about having a family one day.
For anyone with meningitis, I'd say: yes, 'your world does end for about a year, but life goes on and it gets better. Just keep going and live your life as normal. I do'."
'We're so very proud of Louise... and very lucky she's still with us'
Louise's mother Gwen says:
This is the first time Louise has really been away from home. We have the empty nest syndrome a wee bit, but we talk on the phone and have face-time. She contacts me to keep me content; she's very independent.
Louise wasn't sickly when she was born, but she got ill very suddenly when she was two.
There was a bad flu and coughing going about, and we thought that was it. Raymond had been out working on the car the day before and Louise had been pottering around with him.
She didn't have a rash initially, but she went into convulsions, which was frightening, and was rushed to the Royal Victoria Hospital in Belfast.
The doctor there diagnosed meningitis and said there wasn't much hope of survival. It was a nightmare.
We waited for days by her bedside while the doctors tried to stabilise her.
Louise's little feet and fingers were very cold, and the ends of her fingers had started to turn black.
The doctors told us the septicaemia was setting in and the brain was shutting down the blood supply to her limbs.
It was telling the body to concentrate on the main organs, and send the blood to them, so it was decided that Louise should be operated on to see if her fingers could be saved.
We just wanted her to live. There was no option, and there still wasn't much hope of Louise surviving. It was the first time it dawned on us what was going to happen. We were very lucky that Louise had come that far, but we didn't know how much of her body she was going to lose.
As it turned out, the doctors weren't able to save Louise's left hand and the infection had spread so far, she had to have both legs amputated below the knee. Louise was in hospital for three months. We just took each day as it came. Our church minister came to see us every week, and friends were a great support.
It was a year later when she got her first set of prosthetic legs. The hospital gave her a walker with wheels on, but she wasn't too keen on using that, so come Christmas, we decided Santa Claus would buy her a little pram, and that's how we got her on her feet.
She was given a prosthetic hand after that. She didn't like it, because she was only three; she wanted her hand back as it was before. The fake hand just slipped over her stump and she used to hold her hand behind her back to hide it.
(Now she's got an electric hand which moves with the muscles in her arm - she wears it all the time and can open a bag of crisps, bottles, and things like a yogurt pot.)
As she grew up, if there was something she wanted to do, we always tried to find a way around it.
She went to an ordinary school and did all kinds of sports - badminton, hockey, even football. And we all took part with her, as a family, in fundraising and awareness events for Meningitis UK.
I never thought she or I would live to see the day she'd get the BEM. I'd say her surviving the illness opened different doors for her, doors that would not have been open to her ordinarily. We're very proud of her and very, very lucky she is still with us. She's very good now, health-wise.
I don't know what her ideas are about marriage and kids are, but I think boys are beginning to come into the spectrum now. You never know.
I'd maybe prefer her to get a boyfriend near home, to keep her mum and dad happy."
Warning signs to look out for
Meningitis and septicaemia can often happen together. Be aware of all the signs and symptoms.
Do not wait for a rash. If someone is ill and getting worse, get help immediately.
Symptoms can appear in any order. Some may not appear at all.
Common signs of symptoms of meningitis and septicaemia:
- fever, cold hands and feet
- drowsy, difficult to wake
- confusion and irritability
- severe muscle pain
- pale, blotchy skin. Spots/rash
- severe headache
- stiff neck
- dislike bright lights
Early symptoms can include:
- fever, headache, vomiting, muscle pain and fever with cold hands and feet
- someone with meningitis or septicaemia can get a lot worse very quickly. Keep checking them
- trust your instincts - get medical help immediately
For more information, visit meningitisnow.org or tel: Meningitis Now Northern Ireland 0345 120 0663
Helpline number: 0808 80 10 388 or email firstname.lastname@example.org