King’s Lynn family shine light on invisible illness
A Gaywood family whose lives have been blighted by epilepsy is raising money to buy specialist watches to help others suffering with the life-threatening condition.
Alison Glass, 34, her son Harvey Rippin, 14, sister Stephanie Walker, 38, and nephew Connor Walker, 20, have been affected by the illness for a number of years.
The family have set up a Facebook group called Embracing Epilepsy and on Friday night raised £1,163.33 after hosting an evening of music with the Bear Club at Lynn’s Workers Club.
Miss Glass, whose late father David also had the illness from the age of 30, said: “I tend to refer to the condition as “the invisible illness” and I wanted to give a little to other sufferers.
“As a family, we have struggled with a number of different issues, including being able to work, suffering injuries do to the condition, feeling isolated, alone and depressed without much in the way of support.
“As a parent with epilepsy, I have watched my child and nephew struggle and at times they have been stripped of much of their independence
“I decided that locally we needed some sort of support network and way of providing children with equipment to regain some independence.
“My sisters and myself have made it our mission to spread awareness and start raising funds to provide empatica epilepsy watches to children under the age of 21.”
Harvey was just nine-months-old when he suffered his first seizure, while Alison, Stephanie and Connor were all in their teenage years when the illness first began to take a grip.
There are around 40 different types of seizures and every 1 in 26 people will be diagnosed with the condition.
More people die of SUDEP (Sudden Unexpected Death in Epilepsy) than in house fires every year.
Miss Glass said: “Most people are unaware that epilepsy takes many lives each year. Sudden death in epilepsy is on the increase, yet the awareness about the illness and SUDEP isn’t very well known.
“Epilepsy in children also tends to go hand-in-hand with many other conditions, including behavioural issues.”
The empatica watches monitor brain activity and help to reinstate some independence into daily lives.
They send an alert to carers when a seizure is imminent and can also track activity, stress and overall balance.
“We donated two watches to Evie Boon and Connor Walker in June and after Friday night’s event we want to help with further donations of watches,” added Miss Glass.
“We had the most amazing night and cannot thank everyone enough who helped support the event by attending and also purchased raffle tickets.
“The condition varies in severity and seizure types and my message to others is don’t wait until it happens to someone you know to make yourself aware.”
So far, West Norfolk businesses Featherby Flooring, Dedicated Care, Yallop Roofing and Cladding, Windsor Bishop and D &O Motor Services have all donated to cover the cost of a watch for a year.
To help donate towards a watch visit: https://www.gofundme.com/epilepsy-embrace