LOCAL football star Richard Cresswell has joined up with a group of lifelong local friends to raise awareness and money for a charity which helps children with a rare condition.
Bridlington-born Richard, along with Scarborough-born footballer Jonathan Greening, will join Brid lad Mark Chapman and others in attempting to complete the 170 mile Way of the Roses cycle route from Morecambe to Bridlington in under 36 hours for the Dravet Syndrome UK charity.
Mark’s 18 month old twin girls Darcie and Evie have both been diagnosed with the rare, life changing condition Dravet Syndrome – a severe form of epilepsy.
Mark, who now lives in Cheshire but regularly returns to the town to visit friends and his parents, who live on Fortyfoot, said: “The last 18 months have been a rollercoaster of emotions and my family and I have been to hell and back. The constant that has kept us going is the amazing help and support that we have received from the charity Dravet Syndrome UK, which is why I am putting all my efforts into giving something back.
“It is also in times like these that you realise what unbelievable support we have had from family and friends. It is so humbling to see the close knit community of Bridlington pull together and really help our efforts to raise much needed funds and also generate valuable awareness of the condition.”
There are just 300 people diagnosed with the syndrome in the UK and Darcie and Evie are the only known set of twins that have both been given the diagnosis.
The twins did not have the best start to life, arriving 12 weeks premature and at 9 months old they were diagnosed with epilepsy followed by the heartbreaking news that they also had the little known Dravet Syndrome - which is diagnosed in infancy.
Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge.
Individuals with Dravet Syndrome face a higher incidence of sudden unexplained death and have associated conditions, which also need to be properly treated and managed.
The family say they have received great support from the Dravet Syndrome UK charity, along with help and support from family, friends and members of the general public – with co-ordinated charity events taking place in the United States and Australia.
It is because of this support that Mark has organised a series of events with the hope of raising awareness and much needed funds to help the charity research the condition and hopefully provide better treatment and medication.
To help the cause, you can donate securely online at the website www.justgiving.com/Mark-Chapman13