A COUPLE whose seven-year-old daughter has a rare, life-limiting, form of epilepsy, are backing a UK-wide campaign to raise awareness
Martin and Gemma Stocker from Brighton are among those helping charity Dravet Syndrome UK to spread the word by sharing their stories during June, Dravet Syndrome Awareness Month.
For people with the condition it is not uncommon for individuals to have multiple seizures day and night, in some cases hundreds.
There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
Martin and Gemma’s daughter Paige was diagnosed just before her first birthday after months of seizures and blue light ambulance dashes to hospital.
As well as seizures, Paige’s speech and language is also severely affected by Dravet Syndrome.
Gemma said: “Paige had her first seizure at nine months old. It was absolutely horrendous and lasted four and a half hours.
“At the time, it was put down to her having a temperature and being poorly. But she had more seizures after that, each lasting a very long time.
“Her consultant recognised that it could be Dravet Syndrome straight away and offered to get her tested.
“We were lucky in that she could then be put on the right medication, and we could get support in place from the beginning. We’re aware that often families aren’t diagnosed until later on.
“Our lives changed completely when Paige was diagnosed. She has to have 24/7 care. But we manage. It helps that we have very supportive families.”
The Stocker family are among those helped by Dravet Syndrome UK.
The charity provides emotional, practical, and financial support for more than 550 families with the condition.
Although officially a “rare” condition, occurring in around one in every 15,000 live births, Dravet Syndrome is one of the most common genetic epilepsies, as well as one of the most treatment resistant.
Because children and adults with Dravet Syndrome have such complex medical needs, often requiring emergency care, lack of awareness can make living with this devastating condition even more challenging for families.
Galia Wilson, chairman and trustee of Dravet Syndrome UK, said: “Scientific understanding of Dravet Syndrome has improved significantly during the past decade.
"The availability of genetic testing has helped increase diagnosis and now there are newer, more effective treatments available too, such as fenfluramine, which has been recently recommended by NICE.
"But wider awareness is needed to bring attention to these advances if they are to bring real-life benefit to as many patients and their families as possible.
"We are grateful to all the families who are sharing their stories during Dravet Syndrome Awareness Month.
"We hope that by shining a light on this catastrophic condition more families can get an early diagnosis and the vital support that they need.”
To find out more about Dravet Syndrome, please visit www.dravet.org.uk or email the charity at: info@dravet.org.uk
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here