A Surbiton couple is backing a UK-wide campaign to raise awareness of a rare form of epilepsy that affects their daughter.
Jennifer and Tom Allen's nine-year-old daughter, Beth, has Dravet Syndrome.
This is a severe, life-limiting condition that causes frequent and prolonged seizures, as well as a range of other symptoms.
It is classed as a "rare" condition but is one of the most common genetic epilepsies, affecting one in every 15,000 live births.
The couple are sharing their experiences to support charity Dravet Syndrome UK's campaign, which aims to improve diagnosis and care for those with the syndrome.
Beth had her first seizure at just seven weeks old and was diagnosed with the condition four months later.
Since then, the family has made countless emergency trips to the hospital.
Jennifer said: "For the first year of Beth’s life, I slept in hospital more than my own bed.
"The frequency of her seizures was huge, and they often lasted over an hour, they are horrific, very traumatic to see.
"I felt like I’d lost her so many times, she has been intubated twice."
Dravet Syndrome is caused by a mutation in the SCN1A gene in around 85 per cent of cases.
It is not uncommon for those with the condition to have multiple seizures each day and night, with the risk of Sudden Unexpected Death in Epilepsy (SUDEP) being up to 15 times higher than in other childhood epilepsies.
Almost one in five children with Dravet Syndrome do not reach adulthood.
However, epilepsy is just one aspect of the condition.
Dravet Syndrome also causes learning disabilities and various associated conditions, including autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding, and sleep.
Beth has a developmental delay, autism, and reduced mobility, and is non-verbal.
Jennifer continued: "I wasn’t leaving the house, I was terrified because I’d just be undressing my baby, and she’d have a seizure.
"A while ago, over a period of ten days, I was in ambulances with Beth being blue-lighted to hospital four times."
While Beth's seizures have reduced in frequency, the Allens continue to face challenges related to the complex condition.
Jennifer said: "I have a four-year-old as well, but I still can’t be alone with both of my children at the same time.
"It’s helicopter parenting with Beth, you have to be behind her all the time, you can’t leave her for a second as she has no awareness of dangers.
"So, it’s incredibly difficult.
"Just being constantly on high alert is absolutely exhausting.
"There needs to be greater access to support for families."
Dravet Syndrome UK aims to raise awareness of the condition to enable earlier diagnosis and timely access to necessary treatments, therapies, and support.
It is the only UK charity dedicated to supporting those with Dravet Syndrome, providing emotional, practical, and financial support for almost 600 families.
The charity also funds research into the condition.
Galia Wilson, chair and trustee of Dravet Syndrome UK, added: "Dravet Syndrome is a devastating, life-long and life-changing condition that affects the emotional well-being of all the family, but all too often this is overlooked.
"Someone with Dravet Syndrome needs 24/7 care for life.
"Severe and life-threatening seizures mean parents must constantly be on alert, while the developmental, behavioural, and mobility aspects of the condition require constant support and care.
"By empowering parents like Jennifer and Tom to share their experiences, Dravet Syndrome UK hopes to bridge the gaps in understanding and help drive meaningful change."
Share