Nine-year-old Sofia Crockatt’s work for the Meningitis Research Foundation (MRF) is nothing short of remarkable.
The St Catherine’s RC Primary School pupil is comparatively thriving now, and over the coming months is involved in a number of fund-raising and awareness events with her family – talks, walks and runs – to help mark 25 years of the charity.
In spring she attended a charity ball in London and appeared on various TV shows with her dad Nick, as he backed NHS support for a vaccine against MenB, the UK’s leading cause of life-threatening meningitis.
That change in national thinking means guidelines are now in place recommending the vaccine for all babies at two, four and 12 months, a move that should mean hundreds of families won’t have to go through all Sofia and her family did.
Sofia contracted meningococcal septicaemia at the age of two and a half. And so began a devastating chain of events.
Nick, 42, said: “That’s the scariest thing about this disease, how quickly it can come on.
“It started with mild flu-like symptoms, then that next morning we checked on her first thing, and she seemed fine.
“We let her sleep in as she’d been up in the night being ill. There were no significant symptoms then, not until about an hour later.
“Instinctively, as a parent I knew something was wrong, and parents shouldn’t be scared of panicking. If you know something’s wrong and think, ‘this isn’t flu, it’s something more sinister’, ring an ambulance, get them to A&E.
“The consequences of not doing that are significant. We were lucky, Sofia was lucky, and we’ve made friends who are lucky, because their kids are still here.”
The next few months were something of a blur for Nick and his wife Karen, but they recall that initial night and day in crystal-clear detail.
Nick said: “Within seconds I knew something was seriously wrong. I was holding on to Sofia, her head lolling. She was losing consciousness.
“I shouted ‘Dom! 999! Now!’ My son, then 18 and doing his A-levels, was incredibly calm and rang the ambulance. Within minutes we were off to the Royal Preston Hospital.
“There were four or five hours while they tried to resuscitate and stabilise her. We genuinely thought she was not going to make it.
“But then a recovery team arrived from Manchester Children’s Hospital and an anaesthetist from the Royal Preston saved her life.
“They got lines in for antibiotics and fluids and managed to pull her through the worst. Then came a transfer to Manchester, and maybe two weeks in intensive care.”
Nick, who works for a medical company, and Karen, who has a nursing background, lived in at the hospital for two and a half months, ‘sleeping on a camp bed’, while Dom looked after affairs at home.
“For two weeks we hardly slept or ate, always expecting the worse. But then there was that gradual climb out.
“We celebrate the milestones. That’s one thing that got us through as a family. When good things happened, we’d almost be high-fiving each other.
“We reviewed each day as it came, and emotionally that made us realise we were moving in the right direction.”
At Booth Hall Children’s Hospital, the damage became apparent.
A series of daily, painful procedures followed, with Sofia’s lower limbs worse than anticipated.
Her left leg was amputated below the knee, but a battle to save her right leg was ultimately successful, and Sofia bounced back after several operations.
She was eventually healthy enough to come home, and last year became the first junior MRF ambassador, championing the work of the charity.
Nick said: “But for the MRF and other meningitis charities, would we have known what to look out for?
“Would we have guessed this was meningitis and got Sofia to hospital right away?
“The work the charity does in raising the profile and getting high-profile support has made people much more aware.”
Nick also underlined the importance of watching out for a rash, which only started to develop late on for Sofia. But again he stressed: “Don’t wait for it if your instincts tell you something is wrong.”
Sofia’s own charity work includes school visits, telling children of her age about her experiences.
Her dad added: “I’m personally in awe of the fact she’s just nine, yet standing in front of 100 children giving presentations.”
Nick continues to urge parents to remain vigilant, and said: “What I don’t want is people thinking you don’t have to worry about meningitis.
“I’d hate other parents to go through something similar. We’ve been to hell and back these last few years.
“When this vaccine gets out there, kids’ lives will be saved and thousands of families won’t have to go through what we did.
“But we still need to be aware. By getting to know what those symptoms are, a parent can potentially save their child’s life.”
This week, Nick is planning to take part in a 25th anniversary MRF walk – a 100km Peak District trek from Sheffield to Manchester – with Sofia’s support.
He said: “Although Sofia won’t be able to take part herself, she will be at the start line to cheer us off.
“Even at nine, she understands there’s a role she can play helping other people be more aware.”
Sofia has missed out on a lot of schooling, but Nick said everyone at St Catherine’s has been ‘phenomenal’ and ‘incredibly supportive’, as has the NHS with appointment times.
Hospital visits didn’t stop Sofia following dad’s lead last year, taking on the 1.5km Mini-Great North Run while he did the senior race.
Through training – trying out a new leg blade – she also got to meet two leading Team GB paralympic medallists - sprinter and fellow meningitis victim Jonnie Peacock and long jumper Stef Reid.
Nick added: “Jonnie’s an absolute star, one of the nicest guys you could ever wish to meet and amazing with Sofia.
“He was 19 when we first met him, but had so much time for her. They sat down and compared ‘little legs’.
“Stef’s a real close friend of the family and took Sofia under her wing. There are questions she can answer that we can’t. She calls herself ‘Sofia’s leg-sister’.
“She’ has helped us through some dark times.”
Plenty of problems lie ahead as Sofia struggles with her legs, splints and prosthetics.
But the Crockatts see their charity work as a way to help their chosen charity reduce such incidences, and eventually eradicate this devastating disease.
They’ve already raised around £25,000, and Nick concluded: “We’re also celebrating how far Sofia’s come and what she’s achieved so far.”
Nick and Sofia hope to raise £10,000 in 2014. If you would like to sponsor them, visit www.justgiving.com/Nick-Crockatt1 or text CROC99 £5 to 70070