Meningitis in your words

Sofia Crockatt's story

Location: England
Categories: Meningococcal
Age: Toddler 1-3
Relationship: Child
Outcome: Recovery with after effects
After effects: Amputations

February 17th 2007 - The day our lives changed forever! Sofia was two years old and suffering with a flu bug, but it didn’t seem too serious. She had been up in the middle of the night feeling sickly, but still playing with her toys.

The next day when we went in to see her, she was almost motionless in her cot, and she was red hot, and a ‘purple rash’ was appearing on her legs.

Immediately I knew something was wrong, I was holding on to Sofia and her head was lolling and she was losing consciousness.

I strongly believe 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 so I shouted to my son Dom "call 999 Now" and he rang the ambulance and within minutes we were off to the Royal Preston Hospital.

We were there for four or five hours while they tried to resuscitate and stabilise her and we genuinely thought she was not going to make it. A recovery team arrived from Manchester Children’s Hospital and an anaesthetist from the Royal Preston saved her life as they managed to get lines into her for antibiotics and fluids and managed to pull her through the worst.

Sofia was then transferred to Manchester and spent 2 weeks in ITU where her life hung in the balance, each day. She fought each daily challenge, one at a time, despite being in an induced coma for the first few days.

Once Sofia was stable enough, she was transferred to Booth Hall Children's Hospital where the extent of the damage to her body became more and more apparent.

We lived at the hospital for several months, with daily, painful dressing changes, debridements, operations, skin grafts for Sofia. The damage to her lower limbs was much worse than had been anticipated, due to the lack of blood flow to her extremities, and It was decided that the only thing to do was amputate her left leg below the knee. But a battle to save her right leg was ultimately successful, and Sofia bounced back after several operations.

It took about a year for her to build up enough strength to walk again, and she spent most of her time in a wheelchair.

As parents, we were devastated that Sofia had contracted the disease and lost her leg but we knew how lucky we were to still have her with us. We sometimes wish it were possible to speak to our 2007 selves, and tell them, everything for Sofia was going to be fine.

The first thing being: "How many parents get to watch their child take their first steps….TWICE!"

Sofia, is an energetic, positive and sports crazy 9 ½ year old with a smile to light up any room. She is obsessed with para- athletics, attending a weekly athletics club in Blackpool. She took part in the 2013 Mini Great North Run in Gateshead and raised over £10,000 for Meningitis Research Foundation. She has already taken part in the 2014 Mini Great Manchester Run, and will take on the 2014 Mini Great North Run for a second year in October.

She is also a keen horse rider and has ridden for over a year, at a none RDA riding school, recently attempting her first jumps. Cycling has always been a challenge for Sofia, mainly due to the limitations of her “remaining” leg but at Christmas she got her first hand-cycle, which is now known as “Violet” and can be seen most weekends whizzing through the park.

Last year, Sofia was honoured to become the Meningitis Research Foundation’s first ever Junior Ambassador. She has embraced this role with a passion, and as well as raising thousands of pounds, has also given presentations at local schools about the disease.

Sofia is without doubt driven, motivated, and surprisingly mature for her age but we want her to enjoy life, play with her friends, be motivated to keep fit and healthy, and have has much fun as is humanly possible!!

Nick Crockatt
June 2014