Toni

Toni is running the Great North Run for Epilepsy Action in 2021. Her son Will is 14.

“Will started with epilepsy in 2009 when he was 2 years old. His seizures came out of the blue and within 5 days he had gone from having none to having hour-long seizures which required hospital intervention. We tried different medications over a 6 week period before we managed to get them under control. During this time I found another mother whose daughter had died of SUDEP at the age of 6. She helped me find a heart rate monitor so that I could be alerted to Will’s seizures.

We gained control of his seizures for 2 years, but when Will started Reception in 2011, they came back. This time it took us 6 months to find a medication combination that worked. Will’s behaviour was uncontrollable and he ended up with 1-1 support in school. We had stays at Alder Hey to see if he was eligible for surgery, but scans couldn’t determine the source. There was no guarantee of finding the damaged area and no guarantee that the seizures would be controlled.

Thankfully the last medication that the doctors tried in March 2012 worked and we have maintained good control since then. Will’s last status epilepticus was in February 2018 which again resulted in an ambulance journey and a tweak to his medication.

As Will’s seizures were predominantly at night, I still check him every night. You read about SUDEP when you start researching epilepsy and that fear as a parent is always there, that something will happen to them in the night. Will is currently having episodes in his sleep. If these are seizures he might need a medication change. He is also diagnosed with Aspergers and ADHD.

Will has dealt with so much in his life. He wants to interact with his peers in the “normal” way but his disabilities are hidden, and his behaviour and interactions can be challenging. He is often misunderstood and can be a target for unkind behaviour. He has just started Year 10 and hopes to be a businessman. I just want Will to be happy and safe and hope that the research and support for people with epilepsy continues to be there for him, and us, in the future. Ultimately, Will wants to be “fixed!” He wants to have surgery and for the epilepsy to be gone. He doesn’t want to take 4 medications, 3 times a day but for now he deals with it amazingly well and I am proud of him.

Epilepsy is such an unknown. I know we are the lucky ones; we have managed to find a drug combination that works for now. Some parents are watching their children have seizures every day. I know from experience how terrifying this is. You never know how long 5 minutes is until you are waiting for a seizure to be over, after which time you have to call an ambulance.

I have done a few charity events but this year for Epilepsy Action, I am doing the GNR, the Chester Half Marathon on the 19th September and then the Chester Metric Marathon on 3rd October. I also walked the Sandstone Trail in one day (35 miles). Hopefully I will meet my target. If ever my training gets hard, I think of Will and what he has been through. I get my trainers on and get on with it, because I am lucky enough to be able to!

Toni
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