Watch Richard Lawrence's report
A family from Devon say every morning they fear their nine-year-old daughter won’t wake up due to a rare condition.
Paige Slocombe from Okehampton has Dravet Syndrome, which leads to frequent prolonged seizures.
Up until the age of six, Paige had to be resuscitated at least once a fortnight on average, and now her family have to carry around lifesaving equipment wherever she goes.
Around two in 10 of those living with the neurological condition will die before adulthood.
As a result Paige’s mother, Sam Slocombe, says they have to live day by day and “make the most of every moment”.
“We go into her bedroom, it’s the first thing we do - take a massive deep breath and you just hope she’s still alive every morning", she said.
“We live every day like it’s our last, we make the most of every moment we’ve got with her.”
Her family are unable to leave her alone as a seizure can strike at any time.
They are also forced to carry around a large red bag filled with lifesaving equipment, which Sam says they “can’t afford to ever leave behind”.
As a result of the condition, which can also affect intellectual development, Paige has the learning age of a four or five year old.
Sam says: “It really has stolen so much of her childhood. We feel like she’s been robbed of pretty much nine years of her life.
“So these little moments where she’s just being happy and having fun, we hold on to all those moments. They’re massive memories to us.”
There are no warnings before Paige has a seizure though she can be highly sensitive to changes in the temperature.
She is fitted with a device that can sense when a seizure may start and it sends an impulse to her brain.
It activates several times a day but it’s not a cure and her family can never be complacent.
The charity Dravet Syndrome UK says plenty of research projects are currently in place for potential new treatments.
Chair of the charity, Galia Wilson, said: “There are new treatments and there are lots and lots of new research projects that are happening across the world and lots and lots in the UK.
“This condition can be so isolating on families.”