In January 2018, my friend Karen, her husband Jason and their family went through what can only be described as the worst experience of their lives. Their son Lucas lost his battle with Dravet Syndrome; a rare form of epilepsy.
Lucas was 2 years and 8 months old.
I can’t even begin to imagine the pain that they went and still go through every single day.
There were no words I could offer, nothing that I could do, to make that pain easier for them. No one could. Grief is something that everyone processes in their own way.
When I first found out about Lucas’ condition, I was intrigued, I asked questions, I Googled and I marvelled at this strong family. Lucas needed treatment that meant his seizures would be dealt with at hospital. Medication didn’t always work, so they tried a special diet, taking Karen hours of preparation each day. When that was no longer fully effective new medications were tried, time and time again. They bought a special monitor for his bed to make sure they could be aware of seizures during the night and all the while kept smiling and fighting to keep this amazing little boy healthy and happy.
That’s the one thing that stands out for me; Lucas was almost always smiling. He also loved to climb. No matter what, you were always guaranteed to find Lucas clambering up somewhere he shouldn’t, quite often with his friends right behind him!
So when it came time to choose a charity for this years’ Montrose Makers’ Market to raise funds for, I felt no hesitation in the decision to help support families and patients affected by Dravet Syndrome. The reasons below will give you a brief idea of why this support is essential.
Dravet Syndrome is a rare and severely disabling type of epilepsy that presents in infancy and is lifelong. It affects approximately 1 in 19,000 people. Seizures can be brought on by high fever, caused by illness or immunisations. Initially it is thought to be a febrile convulsion, but these seizures will continue to occur, each increasing in severity.
Patients with Dravet Syndrome are particularly prone to status epilepticus, therefore swift medical intervention is essential to stop the seizure as soon as possible to reduce the risk of damage to the brain or breathing problems caused by a long seizure.
From the second year onwards, the child’s development slows down or regresses, sometimes severely. Features of autism and attention deficit hyperactivity disorder (ADHD) are common.
Dravet patients often experience mobility issues, particularly an unsteady gait called ataxia. Some patients are affected severely, whilst in others the problem may be less severe.
Because of this and what Lucas went through at such a young age, I would like to honour his memory by raising money for Dravet Syndrome UK.
You can read more about Dravet Syndrome online at www.dravet.org.uk or pick up an information leaflet at the Makers’ Market.
We appreciate all donations to our purple bucket each month and look forward to announcing at the end of the year how much we have raised for Dravet Syndrome UK.