The excitement could kill her
LittLe girL who has never been to a birthday party,
A five-year-old with a rare condition has never had a birthday party or been on holiday - because the excitement could kill her.
Neve Dandy suffers from such a severe form of epilepsy that even a gust of wind or a fit of giggles could trigger a lifethreatening seizure.
Her parents say they are living with a ‘ticking time bomb’ because they never know when too much excitement or over exertion could induce a fit.
Neve rarely attends play dates and can never go swimming with her brother because the risk of overexcitement and infection is too high.
Neve’s condition, called Dravet syndrome, has seen her have seizures lasting up to one-and-ahalf-hours and up to 200 electric shock type fits a day. She is also at high risk of SUDEP (sudden unexplained death in epilepsy) and sleeps with w a monitor that warns her parents when her h heart rate or oxygen levels change.
Her mother, Rebecca, said: ‘Neve is probably the th happiest little girl you will ever come across. She Sh is always smiling and giggling.
‘But it can feel like you are looking after a tickin ing time bomb as caring for a child with Dravet is very stressful.
‘You never know when the next life-threatenin ing seizure will come, or if a little one will turn in into a big one. I feel incredibly grateful every morning when she wakes up and says hello.
‘We really do have to put a limit on excitement. And even a common virus could lead to a increase in her temperature, which can cause a seizure. ‘It’s quite sad really, always having to tell your child, “don’t laugh too much” or “don’t giggle too much” and telling our son not to make her laugh. It’s really tough.’Mrs Dandy, and her husband Graham, 40, first noticed something was wrong with Neve when she was just four months old. As they attended a christening she began to shake in her father’s arms, and when it finally stopped after 25 minutes, she was rushed to hospital.Neve spent a week in hospital where doctors tested her for a number of different conditions, including meningitis.
But the baffled medics were unable to come up with any explanations, and Neve suffered dozens of other fits before they finally gave her the diagnosis when she was 18 months old.
Dravet syndrome is a rare form epilepsy, with figures suggesting that of every 500 children diagnosed with epilepsy, only two are likely to have the condition.