It all began with a simple idea, fuelled by a deep need to communicate. Until two years ago, I had no idea that anything was wrong with me other than hormonal problems and ADHD. I am currently waiting for a diagnosis of FVSD. I have some spinal issues and memory problems. 

How did I find out?

I was a mum of three, sitting watching the news, dealing with moderate childhood asthma, recurrent infections, and wondering why we had not just got a dog instead of becoming parents. Later, when my older son developed a form of hypoglycaemia, I started to think there might be some kind of genetic issue.

After many ADHD hyperfocuses, I began to realise that I knew a lot about how different health conditions could be connected and how to navigate the healthcare system, even if it was not always successful.

I decided to create content to spread awareness of fetal valproate spectrum disorder and other conditions linked to it, in the hope of raising awareness and visibility for the struggles faced by affected families. Many families have lost loved ones or care for children with high support needs and intellectual disabilities well into later life.

I consider myself very lucky to have the challenges that I do. However, if my health declines in later years, I want to leave something behind that may help my children understand what could affect their own children in the future. Hopefully, I will never need it, but death is no stranger to our family.

It was not until my youngest child was born that I realised how important it was to make sure people understood how deeply we had all been affected, and to give families the opportunity to tell their stories.