Help Luton girl fight rare sleeping disorder which causes frightening hallucinations

Sam at her first sleep study in 2013.
Sam at her first sleep study in 2013.

A strong-willed Luton family are on a mission to help their daughter travel to London for hospital tests, as she is plagued by a rare condition that causes hallucinations - and can make her fall asleep at any moment.

Angela Hart, 44, and her husband, Earl, 52, are hoping to raise £200 in order to take their daughter Samantha to Guy’s Hospital, London, as the brave 20-year-old faces a daily battle with Narcolepsy.

Sam (left) with her family. Her sister Chloe (right) takes Sam shopping and to the cinema.

Sam (left) with her family. Her sister Chloe (right) takes Sam shopping and to the cinema.

The long-term brain disorder causes Sam to face excessive sleepiness, hallucinations, loss of muscle control (cataplexy) - which can be triggered by a strong emotion such as laughter, temporary paralysis when waking up or falling asleep, and ‘sleep attacks’ - meaning Sam can fall asleep suddenly or without warning.

Angela, Sam’s full-time carer, said: “I have been a carer and mum all of her life, as Sam has had delays since a very young age.

“She also suffers with Autism Spectrum Disorder (ASD) and Asperger syndrome, so her understanding in not very good.

“The Narcolepsy has got worse, especially the hallucinations.

Sam (right) was studying a Pathways life skills course at college. She would also love to work with animals.

Sam (right) was studying a Pathways life skills course at college. She would also love to work with animals.

“Sam sees a shadowy figure in front of her, who is sometimes trying to attack her or she hears voices calling her name.

“She gets very frightened.

“It used to be little red men with bows and arrows trying to harm her, but now it’s changed to the shadowy figure.

“Sam has also been told she cannot drive, as she could fall asleep.

“She cannot go out alone as she could get lost or fall asleep anywhere with no warning - even when showering she needs to be watched but has some privacy now as we have installed a wet room.

“Her quality of life is not too great - she even had to give up college as she got severe depression due to lack of awareness and concentration.”

Brave Sam was first diagnosed with ASD and Aspergers in 2013, around the same time as she was going for sleep studies at Papworth Hospital due to the Narcolepsy.

She was eventually diagnosed with the condition around 2015, but as it has now become worse, the Hart family are pinning their hopes on Guy’s Hospital for help, the infirmary known for its sleep disorder centre.

And as Sam’s journey has not always been an easy one, the family are hoping the kind Luton community can help.

Angela said: “School was awful. Sam got bullied a lot and it made her feel different and sad. She was home schooled from Year 7 due to being to poorly for school, while she had treatment at Great Ormond Street Hospital for kidney stone problems, which is all sorted now.

“There is no known cure for Narcolepsy and here in UK not much medication wise – any that are available don’t work due to autism causing adverse affects. Sam has been referred back to her GP but we think she needs more help. We’re hoping for a full cataplexy diagnosis.

“Our daughter will have overnight stays in hospital but really doesn’t want to go through it all again. We are unemployed due to looking after her, and have set a target of around £200 so I can also go to London, as Sam would not like being alone.”

The family have set up a JustGiving page and any donations will be put towards travel and overnight stays in London for Angela, while Sam attends the sleep studies. The Harts also hope to find Sam some ambient lighting for her bedroom to help her relax. Sam has a sister Chloe, 18, and brother Daniel, 14.

JustGiving: https://www.justgiving.com/crowdfunding/angela-hart-2?utm_id=60&utm_term=wwG6M8qxE