Epilepsy is a neurological disorder that can cause unusual sensation/behaviours and/or seizures, which are bursts of electrical activity in the brain that temporarily affect how the brain works.
Zach is currently 11 years old living with cerebral palsy and epilepsy. When he was born, there were many complications and he suffered from several seizures during his time in the neonatal intensive care unit. This resulted in him having a higher risk of developing epilepsy. Near his fifth birthday, his mum, Claire woke up in the middle of the night to see him experiencing a fully compulsive seizure next to her. Following this, he had another seizure months later where an ECG confirmed epileptic activity, resulting in him being put on long term medication.
Fast forward six years, Zach has now tried multiple medications before finally finding one that helped. Today he and his family are currently celebrating two years seizure free. However, his road was not easy. It took a lot of time and energy from him and his family to find a treatment that worked. As he was still a growing child, it meant things like weight had to be taken into account when prescribing drugs to adjust to his weight. Zach has many consultant appointments, contact with epilepsy nurses, paediatricians and neurologists to monitor his ongoing health. Whilst they may be celebrating two years seizure free, epilepsy is a condition that stays forever, meaning for Zach and his family, it’s always a thought in the background.
During the lockdown of 2020, Claire and Zach were watching Captain Tom doing his walk and raising money for the NHS. After looking into it, they decided to do something as well, instead of being stuck at home all the time. Coming across the 2.6 Challenge on Just Giving, they collectively decided to try to raise £260 for the Epilepsy Society to help after all the fundraising which couldn’t happen because of the COVID-19 pandemic. Because Zach had cerebral palsy, he can’t independently walk. Due to lockdown being longer than they thought it would be, Zach’s walking frame was still at his school. As a result, they started taking independent steps in their garden and decided Zach would walk 2.6km for the 2.6 Challenge to raise £260. After starting, they very quickly hit £250 and soon £2,600. The Epilepsy Society started sharing their Just Giving page on Twitter and on their website.
The Negative Side of Fundraising
When their campaign started getting traction on social media, they realised they were being targeted for people sending strobing gifs or anything else to try trigger a seizure.
Sadly, this was not the first time this has happened for the Epilepsy Society, but this was the biggest attack they’ve had, and it had a big effect on Zach and Claire seeing such negative and toxic behaviour.
“Unfortunately, as a result of us trying to do some fundraising, it was soul-destroying to see this result as you never expect these things to happen – nobody ever believes people do this kind of thing.” ~ Claire Keer (Zach's Mum)
The Epilepsy Society said they could stop sharing their content or be involved with them altogether, but Zach refused to back down to bullies. He carried on despite the bullying and ended up drawing more media attention, participated in more interviews where they eventually fundraised over £20,000 from his efforts, which is truly incredible. The amazing impact of what Zach did spread great awareness for epilepsy and the surrounding issues with people treating him that way online. The Epilepsy Society wanted Zach to therefore become their figurehead for their campaign to stop this online abuse.
Online bullying is never okay in any setting, but the reason why Claire believes it to be so important to advocate for this is because this kind of online abuse can result directly in physical harm.
“You can’t punch someone over the Internet, but through sending flashing images, such as a GIF, this could result in people living with epilepsy having seizures, which can be fatal.” ~ Claire Keer (Zach's Mum)
Unfortunately, many still think it’s a harmless joke, but it’s more serious than that. When you live with epilepsy, you try your whole life to medicate against it and take steps to prevent seizures from occurring. It can be devastating for someone to be able to ruin all that hard work from a press of a button, sent through your screen which can immediately trigger their epilepsy and undo all the progress they’ve made in preventing seizures.
Currently, there is no legislation that makes it an offence to cause harm to people living with epilepsy. That is why it is so important for Zach, with the help of the Epilepsy Society and his supporting mum, to drive change through his advocacy. For two years now, they have worked with the Epilepsy Society to try and outlaw sending flashing images to trigger epileptic seizures online. Not only this, but to make it an offence and see epilepsy identified as a standalone into the online harms bill – therefore, it’s not just online abuse, it’s any type of abuse to become a crime. Currently, they are waiting for the final Government approval in the House of Lords, with the intention that the finalised bill will hopefully become law in early 2023.
Whilst they (and many others) wait patiently for this bill to (hopefully) be approved and passed, for now, Claire has some advice. Her main piece of advice when online is to turn your autoplay off on things like Twitter, YouTube and Facebook so videos don’t automatically play. Sometimes, people upload videos from concerts and anything else with absolutely no intention of causing seizures, but by turning this off, you can prevent unexpected triggering videos from coming up and have a bit more control in what you are watching (and what you are watching next).
Whilst they’ve become aware of these horrible people with the intention of hurting others with epilepsy, they’ve also been exposed to lovely people who have supported them throughout their journey. The community is meant to be filled with loving people and with the Epilepsy Society, they hope they are able to pass this bill and officially take a step forward to making it safer for people living with epilepsy.