Tilly love (From The Northern Echo)

Tilly love

12:33pm Monday 30th August 2010 in

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A North-East family have turned a tragedy into an inspiring story of hope. Health Editor Barry Nelson met the parents of four-year-old Tilly Lockey.

WHEN Sarah Lockey put her two little girls to bed on a cold March night three years ago, she had no inkling of the horrific events that would unfold.

It had been a normal day with three-year-old Tia and 15-month-old Tilly happily playing until bedtime at their home in Tow Law, County Durham.

Sarah, now 31, can remember Tilly was just beginning to walk.

“We put her to bed fit and well and got off to sleep ourselves,” says Sarah, who now has a third daughter, Lucyanna, who is two.

At about 3am, Sarah and her husband, Adam, now 30, were woken up by Tilly whimpering in her cot.

“She had a really high temperature. I gave her some Calpol because she was teething and put her back to bed.”

A couple of hours later, her whimpering woke them again, but this time when Sarah picked her up she was violently sick.

To try to settle the little girl, Sarah put her to sleep in their bed.

In the morning, Adam was getting ready to go to his teaching job at Parkside Comprehensive School, in Crook, when the couple noticed Tilly was breathing very rapidly.

“I didn’t like it at all and I decided to ring the doctor,” recalls Sarah.

The couple bundled Tilly into a car and drove her to their local surgery near Consett.

After a check-up, the family were told she probably had an ear infection, advised to give her anti-inflammatory pills and reassured she should be all right within 48 hours. But within a few hours their nightmare started.

“I changed her nappy at my mam’s house and noticed the marks. I saw a few little bruises at first, but then I saw a massive black bruise. It scared the hell out of me and it came into my mind that it might be meningitis.”

Sarah rang 999 and then noticed more and more black blotches appearing under her skin.

“I couldn’t wait for the ambulance and ran out into the street in the pouring rain,” remembers Sarah.

When the ambulance arrived, Sarah noticed that the marks were creeping up her neck and onto her face.

The paramedics immediately got Tilly on to a heart monitor and gave her oxygen.

“The driver gave her a shot of penicillin. I think it probably saved her life.”

As the ambulance sped towards the University Hospital of North Durham, in Durham City, Sarah felt helpless. She now says it was that feeling which drove her to fundraise to help Tilly and prevent other parents going through the same hellish experience.

“When we got to the hospital there were five or six medical staff waiting to grab her and run.

They put her in a bed and there must have been 15 doctors and nurses swarming around her, putting tubes into her and injecting her.”

Then a consultant took Sarah to one side and told her Tilly would be lucky to make it through the night.

“I thought this can’t be happening. It is a complete nightmare.”

Sarah remembers feeling deeply shocked, dizzy and sick.

Adam arrived at this point and recalls: “I thought she just had an infection, but as soon as I got there I was told she may die.”

As they battled to save Tilly, a consultant told them was meningococcal septacaemia strain B, for which there is no vaccination.

Because this incredibly fast form of blood poisoning attacks the vital organs, the body’s defences focus on protecting the brain, heart and lungs. Unfortunately, this means the extremities of the body are vulnerable to severe tissue damage.

Tilly was transferred to Newcastle General Hospital’s paediatric intensive care unit and the couple began a vigil at her bedside which was to last four days.

“When they say intensive care, it really is intensive.

The team did everything to keep her alive” says Sarah.

On day four, the consultant finally had the news they were waiting for.

“He gave us a wink and said she was going to make it, but also warned us about the extent of the damage to her body.”

TILLY’S hands were like claws and all of her fingers had turned black. “They looked as if they would crumble, like charcoal,” remembers Sarah.

The tips of her toes were also blackened, although one foot was worse than the other. “All her legs were black and she had huge ulcers all over her body, it was horrific,” says Sarah.

One by one, Tilly was successfully taken off the machines keeping her alive.

“It was lovely the first time she opened her eyes and we were able to cuddle her again,”

Sarah remembers.

Tilly was so shocked by her experience she was unable to speak for a long time. Hopes that they would be able to save some of her fingers faded and surgeons were eventually forced to amputate both hands and the tips of her toes.

For weeks, the family travelled to and from hospital so that Tilly’s terrible wounds could be dressed. “The pain must have been horrendous.

She used to cry going home and we would always buy her lollies and chocolate drops to cheer her up.”

Even before she had her hands amputated, the couple began raising funds and awareness for meningitis charities and have carried on ever since. “We had a fundraising event in Consett and the support was just amazing. There were queues around the block,” says Sarah.

Thinking of the future, the couple started investigating prosthetic hands and teamed up with a charity called Meningitis Help, which assists families trying to buy limbs for children disfigured by meningitis.

Sarah and Adam then set up the Give Tilly A Hand Appeal, in association with Meningitis Help.

“The response from people has been amazing,”

says Sarah, who, during this interview, opened an envelope containing a £20 note which had been pushed through her letterbox.

They need every penny. The first set of prosthetic hands, which Tilly uses at school to write and paint, cost more than £24,000.

More sophisticated artificial hands, which can be operated via nerve ending in her stumps, cost twice as much and will need to be constantly replaced and upgraded as she gets older.

Recently, the Hilton Foundation made the Tilly fund their chosen charity and a celebrity Diamond Ball at the Newcastle-Gateshead Hilton Hotel on Saturday, September 25, starring singer and X Factor finalist Diana Vickers, is expected to swell the funds.

Tilly’s parents are also excited by Newcastle Racecourse’s decision to hold a special race meeting to help the Tilly appeal. The September 12 meeting at Newcastle’s Gosforth Park racecourse will be the first to be held on a Sunday.

“It is wonderful and should help us to help Tilly for years to come,” Sarah adds.

Tilly was recently signed up by a modelling agency, Tyne Tees Models, which describes her as “a unique little lady with bags of personality”.

All proceeds from her modelling will go towards the fund. “We have made a great start but there is a long way to go,” says Sarah.

■ For tickets to the Diamond Ball, call 0191- 370-9559 or visit givetillya hand.co.uk