The Barnsley teenager and the life-changing impact of narcolepsy

Millie Saul was just five when her mum realised something was wrong.

Millie Saul, who suffers from the sleep disorder narcolepsy, with her mum, Jayne. (Tony Johnson).

“She’d just started reception at school so I knew she’d be tired but this wasn’t normal,” says mum Jayne from Barnsley. “She couldn’t even carry her bag out from school she’d get a friend to carry it for her.”

Her GP thought she might have an iron deficiency but nothing seemed help and Millie would just fall into a deep sleep without warning.

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Jayne Googled her daughter’s symptoms and so when Millie was eventually referred to Sheffield Children’s hospital, where she was diagnosed with narcolepsy and cataplexy, she wasn’t totally surprised.

Millie is very good at IT and wants to do A Levels and then hopefully go on to university. (Tony Johnson).

Narcolepsy is a rare incurable sleep disorder that causes a person to suddenly fall asleep at random times. It is a condition that limits a person’s ability to lead a fully active life and means many aspects of Millie’s life have changed. Cataplexy is a sudden, brief loss of voluntary muscle tone triggered by strong emotions such as laughter and can result in Millie just collapsing without warning.

“Millie was just a normal, happy five-year-old and then suddenly everything was different for her. Her condition changed our lives completely and now our lives revolve around narcolepsy. At first they told me a child of five couldn’t have the condition but the more we have learnt about it the more we realise they can.

“When she was first diagnosed, we didn’t know anything about narcolepsy, and we didn’t know where to turn. I managed to get in touch with Narcolepsy UK and they put is in touch with other families going through a similar thin which was really helpful. And then we were referred to specialist Heather Elphick and the Sleep Unit team at Sheffield Children’s everything changed. The care we have received from them has been second to none, they are absolutely amazing with Millie and me.”

Millie has been receiving treatment and care from Sheffield Children’s Hospital since her diagnosis and now aged 16, still has at least four check-ups a year.

“I think we’ve been seen by nearly every department at Sheffield Children’s,” says Jayne. “Millie also has autism and scoliosis and has metal rods in her back.”

While there is no cure for narcolepsy, Millie takes regular medication throughout the day and night and has undergone sleep studies to determine ways to make it as manageable as possible for the whole family.

“Millie can be walking around wide awake and then she will suddenly fall sleep, she sleeps at least every three hours. It means she can’t do normal things like socialise with her friends or go on public transport. She has to have her own room at school for her to sleep in, it affects her life in every possible way,” explains Jayne.

Her condition means they take a wheelchair when doing everyday tasks like going to the supermarket or for a walk, incase Millie suddenly needs to sleep. She won’t ever be able to drive a car and can’t do things like go swimming on her own in case she has a cataplexic episode.

“Emotions set it off even seeing something funny on the television or hearing a loud noise. It means she can’t go anywhere on her own. She is either at school or with me.”

But Millie has taken it all in her stride. “Millie handles it all amazingly, it means she can’t do so many things and she will probably never be able to do things like drive or be completely independent but she accepts it and I’m so inspired by the way she has dealt with her condition.”

Millie would have been taken her GCSEs but due to the pandemic they have been cancelled which in some ways has helped her.

“She’s just been doing mocks and has had an exam in the morning then come home for a sleep and then gone back for another exam before coming home and going back to bed, but it is exhausting for her.”

Millie is very good at IT and wants to do A Levels and then hopefully go on to university. “She will probably have to stay at home and go in to university everyday but we will cross that bridge when we come to it, we just want her to achieve what she can.

To say thank you for the care Millie receives, fitness instructor Jayne has been teaching online Zoom workouts and has raised over £1,500 for the Sleep Unit at Sheffield Children’s Hospital.

“I wanted to do something to give back for Millie’s care, we’ve been so well looked after this feels like it’s the least we can do. I’ve been holding Zoom workouts since March 2020 when we entered the first lockdown and this time around I wanted to do something to make a difference.

“Although we don’t know what the future will bring, being looked after by the Sleep Unit has introduced us to other families having similar experiences and made us realise we aren’t alone.”

Donations to The Children’s Hospital Charity fund narcolepsy family days organised by the Sleep Team to bring families together for support and encouragement.

“These family days have enabled us to meet other families and children who have narcolepsy like Millie. It’s so nice to be around people who completely understand and we are a support for each other.”

Heather Elphick, Consultant in Paediatric Respiratory Medicine at Sheffield Children’s said: “It has been a privilege to get to know Millie and Jayne, and to bring together all of our families dealing with childhood narcolepsy at our annual family days. The support that families can give to each other for this rare disease is so important.”

The sleep unit helping children

The Sleep Unit at Sheffield Children’s Hospital is one of just a few specialist paediatric sleep services in the UK. The unit investigates and provide advice and treatment for:

- obstructive sleep apnoea

- narcolepsy - a rare neurological condition that affects the brain’s ability to regulate the normal sleep-wake cycle.

- severe sleep walking, night terrors or unexplained nocturnal events

- severe sleep disturbance

To support Jayne’s fundraising please visit www.justgiving.com/fundraising/jayne-collins6

For more information on the Children’s Hospital Charity visit www.tchc.org.uk

www.narcolepsy.org.uk/