Jacob Fynn de Berker was born 5th October 1984 and died 23rd October 2021 aged 37.

We hope this page will encourage creative and thoughtful ways to support the terribly important work needed to raise the profile of epilepsy and to ensure that research is properly funded. Too many young sufferers of epilepsy endure in silence through a lack of medical and public understanding of this common, chronic and often fatal illness. Many are still dying suddenly and unexpectedly, particularly at night, from this most ancient condition.

Our beautiful son Jacob was the third of our five children and one of a large, extended family. He was an affectionate, funny, excitable, and mischievous child, kind and generous, with a vivid imagination. He could be hilarious and outrageous at times. As a child, he loved wild and adventurous games which he and his siblings could give free rein to at our home in a beautiful rural location. Jacob’s games were often inspired by stories he and his siblings were read at bedtime. He devoured books and would read late into the night to his younger brother and sister when lights were supposed to be out! He was an impressionable child, with a definite sensitivity and vulnerability.

Jacob did not develop absence seizures until his mid-teens, and this together with an unhappy period in his schooling destabilised an up to then extremely confident and positive child. We and he felt very poorly supported and informed by any of the medical services we approached over the years. It was only just before he died that a doctor properly took an interest in him, providing proper counselling sessions, a new neurologist and seriously wanting to help him be a well person.

Jacob chose not to take any epileptic medication, due to their well-reported strong side effects. Instead, he wished to lead a life free from such drugs, which repress but do not heal the condition. He wanted to be his true, authentic self, and that became his motto for life.

Jacob loved any form of artistic work and as he grew up, his love of the arts developed into one particular passion, music. Starting with the violin, he moved on to the guitar which he came to love, taking it everywhere he went. After going to art school and studying to be Osteopath, Jacob became a performer and singer-songwriter. Music just had to take precedence!

In his short life, Jacob made a huge number of friends. Babies, children, musicians, young and old have all commentated on the extraordinary kind, loving, funny and uniquely caring person he was. You could talk about anything with him and he really listened. He would think nothing of cooking for a friend’s wedding party, performing music in the evenings and cooking breakfast for everyone after dancing all night. His fire and enthusiasm when in company and at music festivals knew no bounds.

Alongside Jacob’s exuberance was a shadow of melancholy and a sense of isolation, which he struggled with and wrote about in his poetry and the lyrics of his songs. We have come to realise that this is a common feature of epilepsy, experienced in various ways by many. 

Jacob had two large memorial gatherings, one in the UK and the other in the Netherlands, where he had lived for nearly seven years. Videos of him performing and songs he had written are combined with our loving, heart-broken memories of such a wonderful, golden soul. Those who knew and loved Jacob, all wish he was still here. The world is so much poorer without him.

Joy and Nigel de Berker, February 2022

To make a donation to Jacob’s memorial fund, please use the link below.

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