As MPs hold their first evidence session on the Meningitis B vaccine in Parliament today (March 15), we hear from one County Durham mum whose child battled against the illness.
It was a normal evening for Tilly Lockey and her family on Sunday January 20, 2007 until started feeling unwell – and the Lockey’s life would be turned upside down.
“She went to bed healthy,” said Sarah Lockey, Tilly’s mum. Tilly had begun to walk and there had been no problems.
However, in the middle of the night, Tilly started to whimper.
“She had a high temperature. We just thought she was teething, so we gave her some Calpol and she settled down,” Sarah explained.
An hour later Tilly was being sick, so her dad, Adam Lockey, along with her mother Sarah kept an eye on her in their bed.
Next thing they knew in the morning, Tilly was breathing rapidly in her sleep and when she woke she wasn’t responding – she didn’t want to play like any other 15 month old child would.
“Tilly was disinterested,” said Ms Lockey.
Feeling concerned, Sarah rang the doctors and was told to bring her straight to the GP.
Tilly’s doctors knew that she did not look right and after explaining her symptoms – a temperature, rapid breathing and a lack of interest in toys – they ‘diagnosed her with an ear infection’.
Sarah went to her parents to tell them Tilly was ill and they offered to help. She dropped Tia, Tilly’s older sister, at nursery and upon her return to her parent’s home, Sarah’s dad said Tilly had been staring vacantly at the TV.
Tilly “seemed too unwell to have ear infection.” She was drinking – but wasn’t eating. Then came the big shock.
As Sarah’s mum was changing Tilly, she noticed bruises that were getting bigger.
“It was a shock to see,” said Tilly’s mum, Sarah.
“I grabbed a tumbler and pressed it against Tilly’s skin.” The bruises didn’t disappear…
“I thought things like this only happened to other people, not to my baby,” added Sarah.
That was when the Lockey family knew they needed to get help.
Tilly’s skin was mottled blue and grey, she was vomiting and she was drowsy, dropping in and out of consciousness.
Once the ambulance arrived, Tilly was put on heart monitor and “had marks all over her body – her arms, her face…everywhere”.
Doctors gave her a shot of penicillin – which Sarah believes “really saved Tilly’s life”.
She was rushed to Durham University hospital at first.
“There were a lot of doctors when we got there, they grabbed her and ran with her, there were tubes and they were cutting her clothes.”
“It looked like she was going to die,” said Sarah.
It was decided that Tilly needed to be transferred to Newcastle General Hospital – but they would have to shut Tilly’s body down and she needed a blood transfusion.
The news also came that Sarah could not be with Tilly in the ambulance. She would “have to go later, so there were no distractions.”
Sarah followed behind. “I didn’t know if she was alive or dead,” she said.
Once Sarah got to the other hospital, she waited – “It seemed like forever,” Sarah recalls.
Although Tilly was alive, she was at the sicker end of the scale – she had near zero hope of survival.
“I kept thinking – is she going to survive? But they couldn’t give me an answer. Was she going to deteriorate and die?”
After four days of fighting Meningitis Septicaemia – there was an improvement.
Sarah was relieved: “I can’t describe the feeling – she was going to be okay.”
However, the meningitis had devastated her physically. Tilly’s hands and toes were black and bent like claws. She had huge ulcers and sores that were extremely painful.
“She couldn’t wear clothes for months as they hurt and could’ve caused infection. We had to deal with bodily functions,” said Sarah.
“I wanted to hold her again. I wanted her back. I needed her alive.
“Gladly she came out of it – so many kids don’t. It’s a horrific illness and I didn’t believe that it existed,” added Sarah.
Tilly was able to come home. But due to the devastation, the family would have to prepare for the life-changing physical disability that the meningitis had caused, including the loss of Tilly’s fingers and toes.
The family decided to raise money for Meningitis Research, before Tilly had to get her hands amputated.
Ms Lockey said: “I needed people to be aware of it. Tilly’s here for a reason – to help other families.”
The Lockey family also had support from Meningitis Help.
Sarah said: “We had so much support from Meningitis Help. They were there 24/7 – and were the most helpful.
“They found Tilly and still check up on her today.”
Tilly had to get her hands amputated because the septicaemia, which rushes to extremities, had killed the skin on her hands.
They were solid and clawed, “like a black wooden table. They had no use. They had started to separate from Tilly’s arms,” recalls Sarah.
The Lockey family are now ambassadors for Meningitis Research and are faces for Meningitis Help. They also have the Give Tilly A Hand appeal, which was set up by Tilly’s godparents to help raise money for any needs that Tilly may have as a result of the meningitis.
The appeal also goes towards funding any prosthetic hands Tilly chooses to wear.
Alan Shearer and Ant and Dec are a few of the celebrities who have taken part in the appeal.
Tilly is now 10 years old and has continuing trouble with her physical health.
Ms Lockey has signed a petition, started by Lee Booth, which has asked the Government to give the vaccination to all children under the age of 11.
It has amassed more than 823,000 signatures, making it the most signed petition ever and has had a response from the Department of Health.
Ms Lockey said: “What we want is awareness of the illness and that’s why I got behind the petition.
“Meningitis B is the most horrific disease and the one that every parents fear the most.
“It devastates so fast that in many cases it is not caught in time and a child will die or become severely disabled.
“I learnt in hospital that Tilly’s fees would have cost close to £1million – not including any after care. Is this money not better off spent preventing it in the first place?
“We are not asking for everyone in the country to be vaccinated, only the children 11 and under.
“How many have to die before the Government say yes? If someone had been affected by it personally there wouldn’t be any question.
“Just do it. Don’t let another family suffer. It’s cruel.
“You’ve got to have the money to protect. Every mother should have the right to protect their child.
“It’s sad to think that if a family can’t afford the vaccination privately then they have to live with the worry that they can’t protect when they want to.”