My son Zach’s walking challenge was partly inspired by Captain Tom Moore, partly by boredom.
I took him out of school at the very start of the Covid-19 pandemic; he has cerebral palsy as well as epilepsy, which made him clinically vulnerable.
He left his walking frame at school thinking lockdown would only last a couple of weeks but he never went back for it, and after watching Captain Tom Moore on the news, Zach decided he wanted to do a walking challenge too, just to see how far he could go under his own steam.
We drew a 20m track in the garden and decided to raise some money for Epilepsy Society: £260.
We reached that target on the first day, so friends encouraged us to push it to £2,600. We hit that then just kept going. I reached out to Epilepsy Society, asking if they’d share Zach’s fundraising page on their socials.
That’s when the trouble started.
The day after sharing Zach’s story, Epilepsy Society got in touch to say they had been targeted by trolls posting GIFs designed to invoke seizures in people with photosensitive epilepsy.
I couldn’t understand it. Why on earth did we deserve that? This was an eight-year-old boy they were targeting, and while these people were idiots, they were deliberately trying to cause harm.
For Sarah
Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.
Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.
With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.
From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.
Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.
By that afternoon, I was being sent the images, too. Zach was eight but he could see I was upset and knew something was going on, so I explained it as online bullies trying to be mean.
I showed him stills of the GIFs; he has focal aware seizures that are triggered when he starts to fall asleep but I didn’t want to find out he was photosensitive too, and especially not in this way.
I reported the troll accounts but they simply set up new profiles and carried on. The Epilepsy Society went to the police but were told nothing could be done.
That’s when I learnt that the charity had been campaigning to make sharing seizure-inducing posts illegal for years, and they asked if Zach would like to join.
What happened next was a whirlwind.
One of Zach’s first events was an online roundtable with all the social media companies, discussing how they could target people’s malicious activities.
Then Zach started travelling up and down the country, for different appearances, radio and media interviews.
He sat in meetings that went on for hours and met various people, always introducing himself and standing up from his wheelchair to shake hands. People may think these things are just a few photo shoots but he worked so hard.
‘Zach’s Law’ came into force in October 2023 as part of the Online Safety Bill. It makes it illegal to digitally send or show flashing images to people with epilepsy and those caught doing so face a prison sentence of up to five years. Social media companies can be fined up to £18 million if they don’t comply with the law.
It’s a great step forward and I’m so proud of Zach. However, as the law is only applicable in the UK, someone in another country can still send a seizure-inducing post.
Other countries were watching when we passed it here but the whole world needs to follow the UK’s lead to make the law truly effective.
Zach developed epilepsy when he was five years old. I’ve always been honest with him – there’s no point hiding it, he is the one who has to live with it. There were a lot of complications during his delivery, which resulted in a 29-day intensive care stay and a diagnosis of cerebral palsy.
He had seizures at birth as a result of his brain injury, and I was told he’d be at higher risk of developing epilepsy in the future.
In May just before he turned five, I woke up to find him having a fully convulsive seizure in bed.
Epilepsy can’t be diagnosed on the basis of one seizure but when Zach had another the following September, he had an EEG and was diagnosed and started on medication.
Originally it was tricky to get his epilepsy under control. We went through so many different medications, and combinations of medications, but he was still having frequent seizures.
I was trained to give him rescue meds, and keep tabs on every seizure, and I always had a bag packed in case Zach needed to be blue-lit to hospital.
When his neurologist recommended a drug called Levetiracetam, I was reluctant; it has a reputation for its side effects. Eventually, we had to bite the bullet as nothing else was working. Now, touch wood, Zach has been seizure-free for four years.
He’s now 13 and I am so proud of him – he has done something amazing. Zach has been invited into the Speaker’s Bench at Westminster; he has met Rishi Sunak and Keir Starmer and been given awards, but he really knew his achievement was big when he was sitting on the This Morning sofa.
My role is to keep him grounded. It’s strange to think about my child as the figurehead of Zach’s Law when I’m sorting his breakfast and washing his pants!
And as he’s getting older, he wants to stay up on a weekend, and see his friends, and it’s a balance between letting him be a kid and have fun, and being aware that something might happen.
His epilepsy is always in the back of my mind – I don’t know if it’s at the back of his.
Want to help Zach’s public transport campaign?
Sign Zach’s petition to make transport more accessible for wheelchair users here.
People are always asking Zach what’s next. I thought he should take a break but he recently came back from a weekend at his dad’s to say he’s started campaigning for improved accessibility on public transport.
He’d already been in touch with our local MP and the media, and he’s set up a petition which now has over 1,000 signatures. He’s so damned polite but his reputation as a fierce young man precedes him, so people listen to him.
We never intended on any of this when Zach started doing his walking challenge but it’s given him so much confidence. He has seen what he is capable of and he is so driven, he won’t stop.
This experience is showing him: yeah, I’ve got cerebral palsy and yeah, I’ve got epilepsy. And what?
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