1st May 2014 is a day that will always live in the memory. Zac, aged just 2yrs old at the time, was playing as normal in the living room when he suddenly froze, his eyes glazed over and he fell backwards. He looked like he was unable to breath and his lips turned blue. I remember being on the phone to 999 getting increasingly concerned and upset thinking we were losing him whilst waiting for the ambulance to arrive, I have never been so frightened as we had no idea what was happening.
This was diagnosed to be a febrile convulsion brought on by pneumonia. The next one came 5 months later which was brought on by a throat infection and at this stage this was put down to febrile convulsions given his age and the circumstances around it. These seizures were irregular and only seemed to happen when Zac was ill. For the next 12 months nothing happened at all but in November 2015 Zac experienced what we would later learn was his first full Tonic-Clonic seizure. He was in the car on the way home from school when he started seizing and this lasted for approximately 5 minutes before he eventually fell unconscious for another 25 minutes. It turned out Zac had a chest infection and, again, we put this down to being a febrile convulsion.
This sequence continued approximately once per year until the summer of 2019 when, once again, we found ourselves in hospital with Zac following another seizure. A doctor came to see Zac and he suggested that Zac really should have grown out of febrile convulsions by this stage as he was now 8 years old and that they would like to do a sleep study and EEG to test for Epilepsy.
This came as quite a shock for us. I must confess I had no real idea what epilepsy was and I only had pre-conceived ideas that it was bad.
The date for his tests came through and we went through the tests relatively smoothly and finally got the diagnosis of epilepsy In January 2020, though they could not be specific about which type Zac had. I must admit this news was a bitter pill to swallow and took me some time to accept and am very grateful to all of the support I received from Young Epilepsy at this time. Zac, on the other hand took it all in his stride … asking the epilepsy specialist questions on what it meant and what epilepsy was, he was fantastic. He then went back to school and as he walked into the classroom he threw up his arms and announced to his class “Its OK, I have Epilepsy!”. Following this Zac started his medication and almost immediately, to our surprise, we saw an increase in the frequency of seizures. Zac went from having one seizure a year to almost one a week. During lockdown it increased further to one per day and sometimes more than that. It didn’t seem right, despite the stresses of life in 2020, that we should see such a dramatic change and, in liaison with the specialist, changed his medication to Keppra at the end of June 2020.
On the 8th June 2020, Zac asked me if he could join me for a run. I gladly accepted and whilst we were running Zac said that he was really enjoying it and would like to do a run to raise money for charity. This felt like an excellent idea and when we got home I asked Zac what it was he wanted to do. He said he would really like to do an 8 mile run (because he was 8) and that he would like to raise money for Young Epilepsy before his 9th birthday, which was on the 10th July 2020 (otherwise he’d have to run 9 miles!). Zac told us he wanted to set a target of £300. We set a date of the 4th July 2020 for the run and got to work! At the time of this Zac was having regular seizures and we were not sure how he would get through the run but his attitude and positivity was not to be told otherwise! Zac came on regular training runs of increasing distance and he just powered through. As the days passed we watched his fundraising total go up and up and he was stunned to see he had blown through his original target in a matter of days. As the days passed Zac started to feel like a true celebrity as he got a shout out on Eagle Radio, a personal video message from his favourite YouTuber (Kindly Keyin) and a letter from Ole Gunnar Solskjaer (Manager of his favourite football club, Manchester United).
On his final training run before the big day he suffered a fairly big seizure about half way round. After he had recovered I suggested we should go home so he could rest. He was determined to finish, even if it meant walking for large parts of it. I have to say I was blown away by his determination and perseverance. At this point we changed to the new medication and we were unsure what effect it would have on him, Our previous experience of starting medication had not been good so we were, of course, worried. Naturally it didn’t faze Zac at all and he was very relaxed about it all. We nearly postponed his Big Run to give him more time to get used to the new medication but in the end decided to press on.
On the day of his Big Run he was feeling nervous. He ate his breakfast (pasta to give him energy!) and started doing some stretches. We stood at the starting line and I gave him a big hug, I was so proud of him and everything he had achieved. As he started off there were loads of people who had come out to cheer him on (as there was around the whole route!) which was wonderful to see and he smiled and told me how much he was loving the occasion. As we continued I was sure he would ask to have a rest, but no … he just kept going … didn’t even break stride until we finally came towards the finishing line. As he ran through the finish line to cheers and confetti he gave a little celebration and there was not a person there that was not in awe of him, such an inspirational boy with the most wonderful, kind, generous heart. He set out to prove that he was OK. Epilepsy would not define him and he wanted to do all he could to help other little boys and girls to be OK too.
Zac has said he would like to repeat his big run every year until his 18th Birthday … so Zac will be doing 9 miles before his next birthday! We will keep you all posted!!!
