George Neil Rigby passed away due to Sudden Unexpected Death in Epilepsy (SUDEP), at his home in August 2023, just three months after his 21st birthday. 

His mother Aileen, Uncle Donald, Auntie Ruth and his Grandma share their memories of George Neil Rigby and the help and support they have received after he sadly passed away.

If you have been affected by SUDEP, please phone our helpline on 0808 800 2200 or contact SUDEP Action at www.sudep.org.uk

Can you tell us a bit about your nephew George Neil Rigby as a person?

(Mum, Aileen) George was born on the 30 May 2002, he was a big baby weighing in at 10lb 7oz, a very happy and contented baby.

George’s personality was larger than life, loved by everyone who knew him, he was kind, caring, compassionate, funny young man with a great sense of humour. And great sense of fun with the most fantastic laugh and smile.

(George’s, Grandma) He had such empathy for everyone. His kindness and empathy astounded me. George could drive me to distraction and the next minute flash that big smile and say sorry!

(George’s Auntie Ruth) He was a great friend and had an enormous passion for football (played goalie for Dumbarton Rivers pan disability football team.

An avid Liverpool and Scotland fan, love of music rarely seen without his headphones he loved his family and was so loved all his life!

George was a big character full of nonsense and fun he was amazingly empathetic. And left a huge hole in the heart of our family!

The outpouring of kind words and support from our local community and friends was a testament to George and the wonderful young man he was.

How did you feel when George Neil Rigby was first diagnosed with epilepsy?

Worried! By the time George was diagnosed, we already knew what it was! We did research and put certain rules in place. Some George wasn’t happy with but eventually understood.

But always worry! You look for answers, hoping to help, then worry about the label and stigma that is attached when you do! Epilepsy is still very misunderstood! And how this will effect the rest of his life.

What type of seizures did George Neil Rigby have and how did it affect him?

Tonic-clonic seizures. Warning signs for us were when George was unwell, a fever or virus could easily upset George’s system and override his medication, leaving him more susceptible to seizures especially at night.

In a lot of respects, we were very lucky living in a small community where we and George were well known.

In that, if George had a seizure whilst out and about, someone would phone or come and get a family member, that they were aware of what to do.

Can you tell us what happened to George Neil Rigby on the day he passed away?

(Mum, Aileen) On the day George passed, he had been his happy go lucky self, he was playing his Xbox, had something to eat, talking to myself and his sister.

George had been for a shower and was back in his room getting some things sorted. I was taking up George his dinner when I couldn’t enter his room.

I called for his sister, as we thought he was having a seizure but saw the colour of George’s feet and knew it was too late.

That was the moment I knew I lost my son. I had to push my son’s body out the way to gain access to his room, that’s when I knew that was my reality, my son was really gone. I had lost him, and it had been a seizure that took him from me.

Did you know much about SUDEP before George Neil Rigby passed away?

(Mum, Aileen) Did not know much about SUDEP. I learned about it online, no specialists or nurse ever discussed this. Since George’s passing, I have read more into it! There should be greater awareness to this!

(George’s, Grandma) I was aware of this, but from research online. I had to put this to the back of my mind, or George would have had no life!

Do you feel there is more needed in terms of awareness regarding SUDEP? Or other actions that need to be taken regarding SUDEP?

Yes. It should be very much highlighted. Whilst I don’t think it should be at your initial diagnosis, it really should be emphasised early on. And information on the subject given.

What help and support have you received after George passed away?

We cannot tell you how wonderful the support from our local community has been for all our family!

It is a true testament to George. On what a kind, loving young man he was.

What would you say to someone who has lost a loved one to SUDEP?

What can you say? There are no words to say how your world has fallen apart.

With the help of loved ones and friends, you will get through this! You are not alone.

How would you like George to be remembered?

As a happy young man! Who loved to laugh, and amazing friend.  Kind, compassionate.

A son, brother, grandson, nephew cousin, who meant the world to us.

You can find out more about SUDEP by clicking here.