SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Toni Slade shares her story in memory of her son Nathan

I had boy and girl twins, Nathan and Taryn, whilst living in South Africa at the age of 23. My marriage broke down and the children and I returned to live in the UK in June of 1997, when they were 8 years old.

Nathan had febrile convulsions with fever and at the age of 6, he was diagnosed with epilepsy. First he would go into a ‘trance like’ state, then these progressed to full tonic clonic seizures whilst he was awake.

Nathan’s twin sister, Taryn, is 3 minutes older than him. Taryn was always a leader and Nathan a follower. Nathan was dyslexic and struggled at school. He was bullied at school and struggled to make friends. He struggled with self confidence and trying to understand why his peers were not accepting of him. 

Once Nathan started college and work, he came into his own. He made friends and was involved with ten pin bowling. He enjoyed going to the gym. Nathan attended adult education to improve his Maths and English so he could earn more in a better paid job. He bought an expensive camera and equipment and went to college to study photography. He passed his driving test, but twice had to surrender his licence because of seizures; he really wanted to be able to drive again. He bought an expensive bicycle and went riding whenever he could.

Nathan looked up to his sister and wished he could be like her. He saw her moving on in life and felt left behind. She bought her own car and he couldn't have the same. She earned more than him but he couldn't manage a better paid job. He eventually had no choice but to do 3 two hour shifts at Iceland Foods because he felt so exhausted. He had worked for Iceland for 8 years and was well loved by all who worked with him. He had his first girlfriend at the age of 25, he was a late bloomer. 

For the past 5 years, Nathan’s seizures progressed to nocturnal seizures which remained uncontrolled despite many changes to his medication. He was having a seizure every two weeks; he had felt terrible and looked sallow and fatigued for a long time, whilst trying to lead a fairly normal life. 

His death came as an enormous shock to family and friends, and we are still reeling from the events of the last few weeks. I still can't believe I am relating these words to you explaining what has just happened to my beautiful boy; I feel like I am talking about someone else and not my own child. We are left feeling like we are in a bad dream and need to wake up from it now. It doesn't seem real, and his twin sister and I cannot understand or grasp the reality of this.

The post mortem result came back as SUDEP and this is the first we had heard of it. We now want to bring awareness of epilepsy and SUDEP to the fore and raise funds for much needed research because we are all searching for answers as to what happened.

Our friend Barbara Vessey suggested putting a bowling tournament together in Nathan’s memory. Barbara was involved with the Little and Large teams when Nathan started bowling at age 8 so she had known him for many years. The event was well attended by both pro bowlers and non-bowlers wanting to support friends and family having known Nathan. We raised £1600 which was split between SUDEP Action and another epilepsy charity.

A number of Nathan’s friends also had the idea doing a coast to coast cycle ride to raise funds for SUDEP Action in his memory. We are in the process of putting this together. There are 19 people in total taking part in the event which starts on 24 June 2016. They plan to cycle from Whitehaven in Cumbria to Tynemouth, 140 miles over 4 days. Taryn will be joining them and will be using Nathan’s bicycle!