'Each morning I check she is still alive': Parents praying Beverley girl Sky, 7, will survive deadly illness
AN EAST Yorkshire couple are praying this year will not be the last with their daughter who is fighting a rare illness.
Seven-year-old Sky Steventon suffers from a rare form of epilepsy known as Dravet Syndrome.
Most sufferers only live to about seven or eight-years-old, making this stage in Sky's life crucial.
Her parents, Lisa and Nigel, say they are always fearful of when Sky's next seizure will happen, but push thoughts of her life expectancy to the backs of their minds and take each day as it comes.
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Nigel, 43, said: "The first thing I do each morning is put my hand over her face and check she is still breathing. The life expectancy for Dravet is about seven or eight years old, so it is something that plays on your mind.
"It is an awful thing to think about as a parent."
In her short life Sky has been to hospital more than 800 times – ranging from an overnight stay to a fortnight. She even spent Christmas Day last year in a hospital bed.
Nigel said: "As a parent it is the hardest thing ever to swallow.
"You go into hospital and you can't help but notice people dragging their kids up and see drug users queuing for their medicine at the pharmacy.
"You look around and think, 'We've done everything right in our life, where is the justice in that?'
"But you have your cry and thump your fist on the table and then you move on."
Sky was diagnosed with Dravet Syndrome when she was 18 months old. It came almost a year after she had her first seizure aged six months.
Lisa, 41, said: "We'd been shopping but we'd forgotten something so Nigel popped back out while I went to change Sky.
"She was shaking all down one side. It stopped but then started again all down her other side.
"I rang the health visitor but she said new mums often get worried and see things that aren't really there.
"I knew something was wrong and that I needed to get some help – I was really panicked."
Sky was put through a series of tests and trialed on different medications but nothing seemed to work.
Eventually, she was diagnosed with Dravet Syndrome, after her blood samples were sent off to a specialist in Glasgow.
Lisa said: "There is a high risk of sudden death and a bad seizure could mean the end.
"It is hard to say what her life expectancy is, but quite a lot seem to live to about seven years old.
"But then I've heard of families whose children have lived to 12 or 13. Every day is a worry, but you just have to live for today.
"It is one of those situations where you just have to carry on."
The Beverley couple, who live with Sky and their other daughter Grace, four, say they fill Sky's time with happy memories.
The family have just returned from a few days at Center Parcs and Legoland.
"Every holiday has to be planned so we are never more than 15 minutes away from a hospital," said Lisa.
"At first we didn't go anywhere, but we want to do as much as possible with her now, funds depending."
But Lisa and Nigel have to be very careful not to get Sky too excitable, as this is one of the triggers for a seizure.
Lisa said: "The triggers are being too hot or too cold, any kind of bug or illness, tiredness and sleep deprivation and getting her too excitable.
"She does get excitable if she is playing with lots of children, so we just have to have a time-out.
"We've learned how far she can go, so we know what things she can do and when to stop."
Although Sky is currently in mainstream school at Beverley Minster Primary School, her parents would like her to join a special school in future.
For now, the family are happy to spend time together, go on holidays and try to let Sky enjoy all the things any other seven- year-old would.
Lisa said: "You always like to think there will be a cure one day, but obviously that is just something you don't know.
"Every day it plays on your mind, it is constant.
"But that is our life, it never goes away and it is awful. Bad thoughts pop up but you try to shut them off and get on with it.
"You have to, otherwise it would drive you mad."
• Read more about brave Sky Steventon in today's Mail.