If anyone ever asks me in the future why I decided to start doing this, there would be a lot of reasons. But sometimes it’s simply a case of: I just felt like doing it.
In this particular case, I’d just had enough.
I’d had enough of people not knowing what my condition was. I’d had enough of complacency, of doctors and nurses losing their objectivity in stressful workplaces and, sometimes unintentionally, neglecting their patients.
For years we had discussions with doctors about our children after dealing with hypoglycaemic attacks, asthma attacks, recurrent infections, chronic diarrhoea, and no real answers. It felt like more than what parents are normally expected to go through.
I’d seen the news reports on TV and heard about the campaign, but I didn’t really understand how serious it was until after my last child was born with skeletal defects and developmental delay.
My first son was different too. When he developed ketotic hypoglycaemia around the age of three, I thought maybe there was something genetic involved. After metabolic and genetic screening, we were told his condition was idiopathic — in other words, unexplained.
That was hard to accept, but we tried to move on.
Then my youngest son, Silas, was born.
I knew the doctors didn’t really have a clue. And I didn’t want to become the person online attacking healthcare professionals or questioning their competence. But in the end, a lot of this came down to research, listening to community stories, and recognising symptoms through self-awareness.
That’s difficult enough on its own, especially for people in overwhelming situations where they are full-time carers with no clear ending in sight and very little support coming their way.
I can’t change what happened to me or my family. But I can try to help build a community — or reinforce the one that already exists — in my own awkward, slightly dodgy way that people know me for.
I’ve built this website as a place for the community to share their stories: how they got here, what they’ve experienced, and the chronic conditions associated with living with Fetal Valproate Spectrum Disorder or being valproate exposed.