SUDEP Action

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Diane Player shares her story in memory of her son Richard

On the Tuesday 30th June 2015, my life changed forever, when at 7.30 a.m. I went to wake my son Richard who had learning disabilities and found he had died. The only thing I knew I had to do was phone our son Timothy to tell him and ask for help. He calmly told me to ring 999 and that he would be over. The other was to phone Richards day care at The Parchment Trust to cancel his transport. It breaks my heart still that I never took him in my arms again to say goodbye. I can still see him lying there, when I go into his bedroom.

Timothy phoned his brothers, who all came down to be with us. Everything after that is a blur apart from Timothy coming over the following day whilst we found an undertaker to arrange for his funeral. The undertakers set up an online memorial for Richard which was fantastic.

I phoned Parchment to tell them when the funeral was arranged for, Theresa asked if we would like to have his wake at his beloved Friary Gardeners, in their beautiful gardens and that they would organise everything for us which was incredible.

So many people came to the crematorium for Richard’s funeral. All of Richard’s brothers were pall bearers. I was so very proud of them as it was such a courageous thing to do. The service was a simple one, I had written the eulogy which I tried to make amusing and light as I possibly could.

With Tim’s help we chose the music from some of Richard’s favourite dvds.  I can’t remember much about the service or what happened afterwards. Everything seemed so surreal.  How was I ever going to survive without him.

What broke my heart was how devastated Richard’s friends were. They found it so difficult to comprehend what had happened. All I could do was hug them. I can’t remember much about the following weeks. My friends and doctor were very supportive.

We had to wait three months for the post-mortem results. When the coroner told us he had died of SUDEP, we were devastated as we had never heard of it. When I Googled it I came across the SUDEP Action website. I started filling in the form for registering a death but found it too difficult, so I phoned the number on their website.  As soon as I started to explain why I was contacting them, this beautiful soothing voice asked me if I would like help at completing it.

I found it so easy to talk and cry about my loss with Tracy. The feeling of relief was incredible. I have now been talking with Tracy weekly for about six months. She is amazing as is SUDEP Action. I feel that I am so fortunate to have found them. Please don’t hesitate, ring their number and ask for help. I will forever be eternally grateful that I did.