On the 19th March I will be taking part in the first Wigan half marathon, running 13.1 miles around Wigan and Haigh Hall. Then on the 30th April I will be doing the Horwich Pool Triathlon. This consists of a 500m swim in Horwich leisure centre, a 40k cycle ride around Rivington, followed by an 8.6k off road run up to Rivington Pike and back to the leisure centre.
I will be raising money for Rose Blossom Trust in memory of Darcie Chapman and for Darcie's twin sister Evie and all the other children that have the devastating condition that is Dravet Syndrome.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a very rare and catastrophic form of epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy)
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.
Helping the lives of families living with Dravet Syndrome.