This is for a charity you are unlikely to have heard of; Dravet Syndrome UK. Dravet is a rare form of life- limiting epilepsy affecting around 500 people in the UK (mainly children). It is not inherited but presents as new to the individual and it is incurable. An infant is perfectly normal for the first few months of life and then seizures begin. They range from hard to detect absences to myoclonic (drop seizures) to tonic clonic seizures lasting a few minutes to a few hours. Sometimes children stop breathing and have to be resuscitated.
This scenario happens regularly to a 4-year old local boy named Jacob. His seizures began when he was just 4 months old. He has virtually no immunity to illness and even a common cold can cause a seizure that will put him in hospital. He has had over 100 admissions in his short life and has been in intensive care on a ventilator seven times. His family have had huge support from Dravet Syndrome UK and fundraise on their behalf. Every penny they raise goes towards supporting families affected by Dravet, raising awareness of the condition and funding research into more effective drugs. It also helps provide alarms, cameras and sensors to monitor vital signs while children sleep giving parents a little peace of mind a night.
The poster advertises a golf day at Mill Green in Welwyn Garden City on 14 June.
The event is being organised by Jacob’s grandparents, Chris and Lawrence, and they would like as many golfers as possible to enter and support the charity. Individuals or teams of four are welcome and the emphasis is on having fun while raising money for a good cause. The entry fee of £55 includes a light lunch (bacon bap) and tea or coffee. After the competition, there will be a BBQ in the gardens. Prizes will be awarded to the first three teams and there will be individual prizes worth £100 for the highest scoring lady and gentleman. So please support this very worthy charity and contact Chris at chrisperkins49@hotmail.com) or Lawrence at lksperkins@hotmail.com and join in the fun at Mill Green.
For more information on the charity, visit www.dravet.org.uk
Comments