The REAL Sleeping Beauty: Teenage girl’s severe epilepsy causes her to slip into a deep slumber for up to 20 HOURS a day
- Teen schoolgirl has severe form of epilepsy that has put her into comas in past
- Emily Rowland, 16, from Georgia in the US, now has a form of dementia also
- Was forced to give up school over two years ago but happily made it to the prom
The mother of a teenage girl with an extreme form of epilepsy has revealed how the condition can cause her to sleep for up to 20 hours a day.
Emily Rowland, 16, from Georgia in the US, has generalized non-convulsive epilepsy and intractable epilepsy, which means she suffers with extreme lethargy as well as headaches, vomiting and dizziness.
The teenager, nicknamed ‘Sleeping Beauty’ by her boyfriend, experiences ‘staring spells’ and can fall into deep sleeps that last for days on end, meaning she has to be hospitalised and fed through a drip.
Emily was forced to give up school – and her passion for competing in beauty pageants – two and a half years ago as a result of her condition, and her mother Brandi is now her full-time carer.
Tragically, Emily has now developed a form of dementia as a result of the constant seizing, and has told how she’s had to come to terms with the life she planned ‘slipping away’.
Now the family, who live in Warner Robins, are hoping to raise $25,000 to pay for Emily – who hasn’t slept alone in eight years and has fallen into a coma due to her illness on several occasions – to have a vagus nerve stimulation (VNS) device implanted in her chest, that will help to control her seizures.
Emily Rowland, 16, from Georgia, suffers from severe epilepsy which causes her to have ‘staring spells’ and fall into a deep sleep for days on end
Her condition makes Emily appreciate small things other teenagers take for granted more, and she was delighted to be able to attend her school prom
Mother Brandi, 42, said the condition has meant Emily has lost friends – but that her boyfriend, IV Hickam, 17, has stood by her, and took Emily as his date to the school prom.
Speaking about her condition, Emily said: ‘It makes everyday activities so hard. Just trying to get makeup on is tricky – things that other teenage girls do every day with ease.
‘My mum has to do it because I can’t stay awake to. I don’t have the coordination to do it due to the seizing either.
‘The condition also makes getting dressed difficult. There is video of me literally falling asleep standing up trying to get ready in the morning.
Emily has been hospitalized hundreds of times and has not slept alone for the past eight years
‘It happens in restaurants when I am out with my boyfriend or family. It happened at school. My mum has footage of me holding my school books as I struggled to stay awake heading out to class.
‘No place is worse than others for me really.
‘The fact that my whole life, every aspect of it, has been disrupted and my ability to go to school and learn and be an active teenager has been taken away is most upsetting.
‘The hardest part is watching the life I had planned slip away. But I will never give up.
‘I find comfort in listening to music, particularly Shawn Mendes as well as the Zach Williams band.’
Emily is determined to live life to the full and finds comfort in listening to music, particularly Shawn Mendes as well as the Zach Williams band
She enjoyed the prom with her boyfriend IV Hickam, 17, who gave her the nickname ‘sleeping beauty’
Mother-of-five Brandi said of her daughter’s tough journey: ‘Emily was a fast learner and high achiever.
‘She started school a year early and was doing incredible well. So we had no idea that something terrible was going on with her brain.
‘When Emily was younger she started to complain of really bad headaches.
‘She started to get really sleepy. Emily had always suffered on road trips but we thought it was normal car sickness.
‘It was only with hindsight that we now recognise that these things were all connected.
‘Emily began missing more school. Some days we could just not wake her, then tests confirmed that Emily had epilepsy.
‘It is hard to put into words how scary it is.
Emily can sleep for days and will need to be put onto a drip as she is not getting the food and water
‘Her boyfriend calls her his Sleeping Beauty and he invited her to his school prom.
‘She misses out on activities because she is ‘asleep’ normally more than 20 hours a day.
‘She can sleep for days and will need to be put onto a drip as she is not getting the food and water she needs.
‘When she is awake, she puts her best foot forward despite how sick she is and always puts others before herself.’
But Emily has support from her boyfriend, who she managed to enjoy the prom with.
‘Her boyfriend calls her his Sleeping Beauty and he invited her to his school prom,’ her mother added.
What are Emily’s symptoms?
Emily’s generalized non-convulsive epilepsy with intractable epilepsy means she suffers from extreme lethargy, headaches, vomiting and dizziness.
She has ‘staring spells’ that can last for days and can fall into deep sleeps – preventing her from eating, drinking or taking her medicines orally.
Emily’s brain misfires more than 80 per cent of the time.
Her severe seizures have left her with a form of dementia, forcing her to drop out of school.
After unsuccessfully exploring a range of treatments her family is now hoping to try a new method of implant a VNS device in her chest which wires up into her Vagus nerve and will send electrical pulses throughout her brain to help control the seizure activity.
To help Emily’s family with her medical costs visit her Go Fund Me page.
After unsuccessfully exploring a range of treatments her family is now hoping to try a new method of implant a VNS device which should help control seizure activity
Emily’s severe seizures have left her with a form of dementia, forcing her to drop out of school
What are the symptoms on epilepsy? How common is it? And when should you call an ambulance?
Epilepsy is a common condition that affects the brain and causes frequent seizures. Each year around one in 2,000 people develop the condition that can start at any age.
According to the NHS, seizures are bursts of electrical activity in the brain that temporarily affect how it works.
- uncontrollable jerking and shaking – called a ‘fit’
- losing awareness and staring blankly into space
- becoming stiff
- strange sensations – such as a ‘rising’ feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs
- Losing conscientiousness and memory loss
The NHS recommends to see your GP if you think you might have had a seizure for the first time.
Seizure can have several causes and sometimes they’re just a one-off, not necessarily epilepsy-related.
You should call 999 if someone is:
- is having a seizure for the first time
- has a seizure that lasts more than five minutes
- has lots of seizures in a row
- has breathing problems or has seriously injured themselves
Treatments for epilepsy includes taking anti-epileptic medicine, surgery to remove a small part of the brain that’s causing the seizures, a procedure to put a small electrical device inside the body that can help control seizures, a special diet (ketogenic diet) that can help control seizures.
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