For Florence

Our beautiful, courageous and brave Florence sadly passed away from SUDEP (Sudden unexpected death in Epilepsy) on March 11th 2023. Florence was diagnosed with Dravet Syndrome at just 11 months old, an incredibly rare form of Epilepsy, which unfortunately remains underfunded.

Often described as a complex form of epilepsy, Dravet Syndrome UK is a rare neurological condition that affects around one in every 15,000 people in the UK. As well as experiencing severe, difficult-to-control seizures, children and adults with Dravet Syndrome have varying degrees of intellectual disability and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep. Of all the epileptic conditions, Dravet syndrome is believed to have a higher mortality rate. Estimates suggest that 10–20% of individuals with Dravet syndrome do not survive beyond the age of 10. Sudden unexpected death in epilepsy (SUDEP) is the most common cause.

Florence's parents (Matt & Jessica) and Florence's aunties (Lily & Chloe) are doing 5K every day in May to raise money for a charity that will now forever remain close to our hearts, Dravet Syndrome UK. This charity helped support Florence and our family throughout her diagnosis, we will be eternally grateful for them, and we hope by raising money we can offer a small thank you for all the help we have received. Florence was a ray of sunshine for the Dravet Syndrome UK community, with my sister bravely documenting her journey to raise awareness and help support other families.

Florence suffered from Tonic-Clonic Seizures that sadly, multiple times, put her in a life-threatening condition. Florence's trigger was temperature spikes. This meant that something as simple as a cold for you and I would put Florence in a life-threatening position. Florence was on multiple combined epilepsy medications to help control her seizures, however unfortunately the reality for those with Dravet Syndrome UK is that there is currently no cure for seizure control.

As you can imagine, this hugely impacted Florence's parents, and also her big brother Freddie, as their way of life as they knew it, changed forever to protect their baby girl.

Florence's passing was a complete shock to us all, the family, the community and her doctors as despite the odds being stacked against her - Florence was defying them daily. Florence's parents were told that she may never be able to walk or talk at just 11 months old. It brings me much comfort to say Florence walked, talked, laughed, told us how much she loved us, danced and brought pure joy and light to all of our lives.

Please share and talk about Florence’s story. Although it is a tough one - it’s important so that one day we can see change. Together I hope we can share a little awareness around this, unfortunately, it’s not the way we wanted.

I don’t want to end this post on a sad note, because Florence certainly was anything but that. She was strong, beautiful and made every day seem effortless despite her daily struggles. I want her beautiful big smile plastered everywhere because that’s exactly who she was.

Florence, we will forever be in awe of you.