Cyrus was diagnosed with epilepsy last year in April, we were shaken to the core. It was a horrific couple of weeks where he suffered full tonic clinic seizures that showed up in clusters. We didn't know when they would happen, usually at night or early morning and there was no warning signs.

One of the worst parts as parents was the helplessness and having to record his seizures so we could give an accurate account of what happened to the drs. We were in and out of hospital until diagnosed and given medication that has successfully stopped his seizures. The problem we had was the anxiety and fear for Cyrus and as parents of the unknown, if the medication would work and if a seizure would break through how would we know. We have never felt anxiety like it, but thanks to a few charities one providing information and people who understood and another 'Jon Shaw foundation' who provided us with a safe pillow, camera and a bed alarm that would alert us to when he had a seizure in bed at night. Once we had this Cyrus was more confident to sleep in his own bed and we were all able to sleep a little better. We have been so lucky to have the amazing support from family and friends and epilepsy charities that we are all thriving and learning how to live a slightly adapted life. So we would just like to give a little back.

More information about Jon Shaw Foundation: We are the only charity in the UK dedicated to providing safety equipment such as monitors, alarms and pillows to young people (upto 25 years) living with epilepsy. Giving them and their families reassurance that when a seizure happens help will arrive asap. This equipment is not available through universal services.

We promote awareness of Sudden Unexpected Death in Epilepsy (SUDEP)

We provide funding for counselling and therapies to improve the mental health of bereaved siblings and close friends.

Please join myself (Alex) and 2 of Cyrus Aunties Natalie and Cherie as we tackle tough mudder Scotland! We are individually training when and where we can around the chaos of life. I'm so greatful to be able to do this.

So share far and wide many many thanks xxxx