Ulverston mum becomes trustee for Dravet Syndrome UK

Stephanie Smith's son, Jake, one of her 12-year-old twins, was diagnosed back in March 2013 when he was just over 18 months old.

Mrs Smith, her husband Wayne, and twin sister Ella, have been receiving support from Dravet Syndrome UK since Jake's diagnosis.

The family have been navigating the challenges of this condition which occurs in around one in every 15,000 live births.

Although officially rare, Dravet Syndrome is one of the most common genetic epilepsies and is also among the most resistant to treatment.

Roughly 85 per cent of cases are caused by a mutation in a gene called SCN1A.

Those living with the condition often experience multiple seizures day and night, some enduring hundreds, in addition to learning disabilities and a range of associated conditions.

Stephanie Smith has been named as a trustee for Dravet Syndrome UK (Image: Supplied)

These conditions may include autism, ADHD, challenging behaviour, and speech, mobility, feeding and sleep difficulties along with a higher risk of sudden unexpected death in epilepsy (SUDEP).

Mrs Smith said: "A diagnosis of Dravet Syndrome is a life-altering experience.

"As a family we have experienced years of navigating the ups, downs, adventures and misadventures that will be familiar to all families living with Dravet Syndrome, and other families whose children have additional needs.

"I have always deeply respected Dravet Syndrome UK and all the incredible team that work tirelessly in everything they do for the families.

"From the conferences and family gatherings to the medical research and online support, the charity has played a huge part in my family’s life.

"I’m so pleased to be taking on the role of Trustee.

"It’s incredibly rewarding to have the opportunity to join the charity on their mission to improve the lives of all families affected by Dravet Syndrome.”

Stephanie Smith, husband Wayne, and their children Jake and Ella (Image: Supplied)

Chair of trustees, Galia Wilson, says the team is 'thrilled' to welcome Mrs Smith onboard.

She said: "Families are at the heart of everything we do at Dravet Syndrome UK, and it’s very important to us that parents such as Stephanie, with lived experience of Dravet Syndrome, are part of the Trustee team."

Mrs Smith has had a varied career, previously working as a professional singer, senior carer, and in the hospitality industry.

She is also a qualified primary school teacher.

More recently, she manages three businesses, including a power washing company, composite decking firm and a facilitation management and cleaning company, with her husband.

Mrs Smith now joins the existing Dravet Syndrome UK Board of Trustees, including parents of children with Dravet Syndrome, a specialist in charity governance, a financial director, and an epilepsy nurse specialist.

To learn more about the condition, visit www.dravet.org.uk