My son the superhero inspired me to set up a charity to help other families
At school a friend once told me that if you put a frog into boiling water it jumps straight out, but if you put a frog into cold water and gradually heat it up, it just sits there and boils. I don’t know if it’s true for frogs, but I do know it’s absolutely true for parents.
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Creating Sky Badger didn’t really happen the way you might think. Like thousands of other mums, I have a little boy that got sick, really sick. One night when Max was six and a half he had his first seizure, the first of many. As his seizures got worse, we started hearing new words like “prognosis” and “life-threatening”. The water was definitely getting hotter. You know that sharp twist you get in your stomach when you see a bad cut? Well that was the feeling we woke up to and went to sleep with.
A few years later, a lovely charity for disabled children started helping us out. I had someone to wail down the phone to, and I did. Max and his little brother got days out with wildly upbeat teenage volunteers, and my boys started to smile again.
The problem was that the next day we were back to struggling, trying to get Max extra help at school, juggling work with endless hospital appointments, and losing it with a certain leisure centre manageress who refused to let Max swim with the other kids.
The demand for Sky Badger was gobsmacking, and so, in 2011, we became a proper charity.
Those charity days out definitely took the edge off, but they didn’t last long. What we needed was a way to turn off the heat, or at least turn it down.
A few months later, while drinking wine with friends in the same boat as us, we decided that we’d just fix it all, do it right and figure out what would really help families like ours feel like they weren’t being boiled alive.
That was our lightbulb moment. We knew that there was a lot of support out there, even if it was hard to find. Individually, we’d collected loads of information. What if we put it all together and shared it with other families all over the UK?
We started up a Facebook page. Max named it Sky Badger after his alter ego. He would transform regularly into his superhero by tying a tea towel around his neck and running around the house shouting “Sky Badger attack!”
Naomi and Adam Marek with their sons Max and Louis. Photograph: Graham Turner/Guardian
On Sky Badger’s Facebook page we posted about organisations that we had found helpful, such as Independent Parental Special Education Advice, which gives free legal advice about special needs, Great Ormond Street’s information database about disabilities and medical conditions, and the lovely Charlotte’s Tandems, who offer free tandem hire for disabled kids and their families.
One of the most important things about Sky Badger was that we wanted our kids to be just kids. We didn’t want to see them the way some charities portray them in their fundraising ads: in hospital beds, full of tubes and covered in micropore tape. Even though they sometimes were, they were also stroppy teenagers, giggly toddlers … just regular children. Whatever challenges they faced, their medical conditions and disabilities did not and would not define them.
The demand for Sky Badger was gobsmacking, and so, in 2011, we became a proper charity. We became registered, built a YouTube channel, wrote how-to guides and started up an e-helpdesk, manned by volunteers, giving families urgent and personal advice.
That was four incredible years ago. Since then Sky Badger has helped more than 320,000 families and last year we were blown away to win a Guardian Charity Award. It’s been an extraordinary adventure, and we’re still growing, with some huge plans in the pipeline.
And as for Max, he’s doing great. He’s got fantastic friends, he’s learnt to read again and he wants to become a chef. He’s still got epilepsy and autism, but that’s not who he is.
Now, the water’s lovely.
If you would like to tell us about the day that changed your charity career, or know someone who would, please email voluntarysectornetwork@theguardian.com.