As some of you know, Chris and I have a grandson who has a very rare condition known as Dravet Syndrome. Jacob is nearly 4 years old and in his short life and he has had over 90 admissions to hospital and been on a ventilator 5 times.
Dravet Syndrome is a rare form of life-limiting catastrophic epilepsy which does not respond to the usual epilepsy drugs. It is not inherited and presents as new to the individual concerned. For parents, it is both emotionally and financially draining. Babies develop normally at first but seizures begin in the first year of life (in Jacob’s case at four months). They range from myoclonic seizures (drop seizures) lasting just a couple of seconds, absences which are sometimes hard to detect, to tonic clonic seizures lasting several minutes to a couple of hours. Sometimes a child stops breathing and their heart stops. At one point, Jacob was having around 100 myoclonic seizures a day and several tonic clonics a month.
As a family, we have been fundraising for Dravet Syndrome since Jacob was diagnosed 2½ years ago. Chris and I have been holding charity golf days in the UK to raise awareness of the condition and, of course, raise money. John Andrew held the Francis House charity golf day in Almerimar for many years and when he retired from charity work last year, he suggested we carry on the traditional autumn charity day. He has donated the Francis House trophy and Maria and Rudolph have kindly donated other trophies for what we hope will be the annual Dravet Syndrome Charity Golf event.
The Dravet Syndrome charity is run by volunteers so all the money raised will benefit the children and their parents. It will be used in various ways; research into more effective drugs, support for parents and siblings and much needed monitoring systems. Dravet children cannot be left alone and have to be monitored even while sleeping so some of the money will buy sensors, cameras and alarms that will alert parents to changes in vital signs that indicate a seizure. This gives them a little peace of mind a night.
We hope you will be able to join us on Saturday, 13 October. Our objective is to have a fun day’s golf with friends while raising money for a very worthy cause. Please register with me or Chris as soon as possible so we can make sure we have enough tee times. Please quote your handicap. Singletons are welcome we will pair you with another player. The cost of entry is 20€ per person and will include ten raffle tickets. The format is pairs stableford better ball and we have tee times starting from 9am. Registration will begin at 8.30am at the club house and after the competition we will meet at Leo’s Bar for drinks, tapas and the prize giving. Non-players are welcome and Chris would be grateful for any help.
Hopefully we will see you on the 13th but if you are not in Almerimar and would like to make a donation, please let me know.
Lawrence & Chris