- Neve Dandy has a rare and severe form of epilepsy called Dravet syndrome
- Something as simple as a giggling fit can trigger a life-threatening seizure
- An increase in her body temperature can also cause a seizure
- As a result, she has to be protected from childhood illnesses
- This means she cannot go swimming or to play centres
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 life-threatening 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 Dandy (pictured with her mother, Rebecca), five, has a rare and severe form of epilepsy which means something as simple as a giggling fit could trigger a life-threatening seizure
Neve rarely attends play dates and can never go swimming with her brother because the risk of over-excitement and infection is too high.
Neve’s condition, called Dravet syndrome, has seen her have seizures lasting up to one-and-a-half-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 a monitor that warns her parents when her heart rate or oxygen levels change.
Her mother, Rebecca, said: ‘Neve is probably the happiest little girl you will ever come across. She is always smiling and giggling.
‘But it can feel like you are looking after a ticking time bomb as caring for a child with Dravet is very stressful.
‘You never know when the next life-threatening seizure will come, or if a little one will turn into a big one. I feel incredibly grateful every morning when she wakes up and says hello.
Neve’s condition is controlled by a special diet which sees her having to be given syringes full of oil and water
Bright light and wind can also trigger Neve’s seizures so she has to wear sunglasses when she goes out and she has to stay inside when it is windy
‘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.
WHAT IS DRAVET SYNDROME?
Dravet Syndrome is a rare and catastrophic form of epilepsy that begins in infancy.
Children with Dravets tend to have normal development as babies but development starts to plateau when they are in their second year of life.
Individuals with Dravet syndrome face a higher incidence of sudden unexplained death in epilepsy patients (SUDEP).
They often also experience other conditions including developmental delays, sleeping difficulties, chronic infections and difficulty feeding.
There is currently no cure and treatment options are limited – they mainly involve using anti-epilepsy drugs to treat the seizures.
Little is known about the long term prognosis of people with Dravet Syndrome.
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.
As it affects many different parts of the brain, there are a number of different triggers for seizures, as opposed to other epilepsies that might only affect one site.
Sufferers can therefore not undergo brain surgery.
A slight change in body temperature due to illness can cause seizures as can overexcitement and overexertion.
Neve also has photosensitive epilepsy so anything that can give a strobe effect, such as screens, light through leaves or through a net, can cause a seizure.
Sufferers never grow out of Dravet syndrome and most will need care their entire lives.
Many also may be on the autism spectrum and be developmentally delayed – often having mobility issues, behavioural problems and difficulty sleeping.
Mrs Dandy, from Windsor, Berkshire, said: ‘Dravet syndrome affects every aspect of Neve’s life, but still she smiles.
‘She is very environmentally sensitive, the wind causes seizures so if it is a windy day she can’t go outside. She has to wear sunglasses whenever she is outside too.
Neve had her first seizure when she was four months old but was not diagnosed until she was 18 months old
Neve is unlikely ever to grow out of her epilepsy and her parents say she is like a ‘ticking time bomb’
‘She can’t control her body temperature, so I can’t put her in tights for example. She doesn’t tend to go outside over the winter at all. In the summer the heat is even more of a risk.
‘We went through a stage where time on the trampoline would cause seizures or the sunlight through leaves.’
Mr and Mrs Dandy have to be particularly careful when she is around other children or doing fun activities.
‘We are always very careful about germs as even common childhood illnesses can lead to severe seizures. We don’t take her to public swimming baths or soft play centres for this reason,’ said Mrs Dandy.
‘When we do take her swimming somewhere private she goes in for 10 minutes and then it’s out again because she loves it so much that she gets overexcited.’
But the schoolgirl – who was taught at home for two years to avoid infection from other children – is finally getting a taste of normal life, thanks to a special diet.
Mrs Dandy said: ‘You never know when the next life-threatening seizure will come, or if a little one will turn into a big one. I feel incredibly grateful every morning when she wakes up and says hello’
The eating plan has helped keep her seizures under control.
Neve was in and out of hospital and had four stays in intensive care over 18 months until she started on the ketogenic diet.
The diet alters the body’s chemistry by convincing it that it is starving and is formulated to sustain the state of ketosis within the body.
Forcing the body into a state of ketosis causes a build-up of ketones which in turn act as a kind of sedative, preventing the sudden disturbances in the electrical functioning of the brain that lead to seizure activity.
Full time carer Mrs Dandy added: ‘It has been absolutely brilliant. Neve only had to be rushed to hospital once in the last two years, whereas we went more than 60 times in the first three years.
‘She still has seizures every day but they are small and she copes with them. We haven’t had any bigger ones since February and prior to that we hadn’t had one for nearly two years.
Mrs Dandy says that despite Neve’s special diet she still has seizures every day
‘Day to day the diet means I weigh every gram of every bit of food that goes into Neve’s mouth.
‘About 75 per cent of what she eats is fat in the form of healthy oils, and we make the rest up with protein, fruits and vegetables – but we even have to give her syringes full of oil.
‘As a result of the diet we’ve managed to wean her off some of her anti-epilepsy drugs, it’s been amazing to get to know our little girl without all the medications and the side effects that they cause.’
‘Caring for a child with Dravet syndrome can be a very lonely and isolating experience because you have to spend so much time at home keeping your child safe,’ she continues, ‘we have a wonderfully supportive charity, Dravet Syndrome UK and I really don’t know what I would have done without all the practical and emotional support from other parents who are going through the same experience.’