It was so important for Ian that others could be helped by research, even if he couldn’t be.
On the 1st January 2022, Ian’s partner told us he had had two violent seizures. He worked at home on this day until 5pm and then went to bed and slept. We have been told the seizure that took his life was in fact nowhere near as severe as they usually are. He had been due to attend an appointment with his consultant the following Friday as they had put him on the waiting list for VNS surgery. Unfortunately, it was too late for Ian, but we all know he would want us to carry on raising awareness in his name.
Ian’s partner decided against flowers at his funeral so we asked for donations, raising approximately £350 in his memory. We are in the process of organising an event for Purple Day on 26th March, and for what would have been Ian’s 50th birthday – 28th July 2022. Both occasions will be held in his memory, to raise money and awareness for epilepsy. It was so important for Ian that others could be helped by research, even if he couldn’t be.
My daughter was diagnosed with epilepsy at eight years old after having two seizures. She has been up and down with trying to get the correct medication and was diagnosed with NEAD (non-epileptic attack disorder) at age 14 so had a few tough years with these and epileptic seizures. Now 21 years old, she has been stable for three years and has been able to get her driving licence. Since my brother’s passing, I have become very anxious about her health – the threat of SUDEP is constantly on our minds.
Our mam is 87 years old and was terribly affected by Ian’s passing. She has since become another voice in raising awareness and hopes to help others in the same position Ian was in. As a family, we felt Ian could have been given more support for and information about his condition – he was never even told about SUDEP. When a patient is as unstable as Ian was, we think SUDEP precautions must be discussed. If they were, Ian could have taken steps to reduce the risks, and he may still be here today.
– Donna, March 2022