A Banburyshire mum and a group of friends have raised over £40,000 for research into rare genetic condition her nephew lives with
A Middle Barton mum has successfully run a fundraising campaign to help find effective treatments for a rare genetic condition which affects her four-year-old nephew.
Tamara 'Tats' Ward gathered a group of 40 runners who have been running five kilometres a day throughout May, raising money for research into Dravet Syndrome. The condition, which causes seizures, affects her small nephew Dominic.
Dominic lives with the rare, catastrophic, lifelong neurological condition which is often described as 'life-limiting epilepsy'. He will rely on care-givers for life and his seizures - often drug resistant - are slowly but surely impacting his development as they get more frequent and more intense.
Mike Ward, Tats' husband said: "The team spirit has been fantastic and every individual involved in the run has been amazing. With gift aid, the amount she has raised has gone over £40,000. To begin with there were about five to ten people lined up and the target was £3,000 but it's exceeded all expectations. The team has covered more than 6,000km, further than London to Dubai or New York to San Francisco."
The Dravet Syndrome UK charity is dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research. Those wishing to support the fundraising effort can donate at Mrs Ward's Just Giving Page here https://www.justgiving.com/fundraising/run5keverydayinmay4dravetMrs Ward said: "My husband and I and a selfless team of our wonderful family, friends and friends of friends aimed to raise as much money as possible to help those affected by Dravet Syndrome and support the work of this incredible charity by running 5k every day in May.
"My amazing four-year-old nephew and godson, Dominic, lives with Dravet Syndrome that manifests as a chronic form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.
"Constant watch and care is required as seizures must be acted on quickly and the quality of life for the person with Dravet as well as the family is severely impacted. Most people with Dravet Syndrome remain dependent on caregivers for life.
"Issues associated with Dravet syndrome include prolonged and frequent seizures, behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech, growth and nutrition problems, sleeping difficulties, chronic infections and many other issues. Those with the syndrome have a 15 - 20 per cent mortality rate because of Sudden Unexpected Death in Epilepsy."