Mia

Mia had her first seizure at the age of 19 months. She lives with her Dad Stuart, Mum Gemma and her brother Sam. Stuart shares their story.

Mia’s first seizure, when she was just 19 months old, was terrifying. We’d never witnessed a seizure before. Her lips went blue, we were panicking, and she was rushed into hospital by ambulance. We were told that Mia’s first seizure was a febrile seizure and high temperature was the cause – they said that she would grow out of them. But they became more frequent.

Gaining a diagnosis

Mia was given an epilepsy diagnosis, and medication – a sodium channel blocker used in the treatment of epilepsy. However, her seizures continued and became more frequent. We know now that the drug that she was prescribed is avoided in Dravet Syndrome for this reason.

Eventually, the consultant agreed to a genetic test. Her bloods were sent off and when we received the result, it was confirmed that Mia was living with Dravet Syndrome. She was 5 and a half years old.

We were given some leaflets about the condition, but that was it, and being left to do our own Google research, we felt so daunted and full of worry. We came across Dravet Syndrome UK at that point. The website was so helpful to us and we read all of the information. Joining the Dravet Syndrome UK community has helped us to find others affected by the same diagnosis, and we were also granted a Seizure Monitor through the Seizure Monitor Fund. This helped us with peace of mind, and finally we could get a better night’s sleep. If you get sleep, you can do anything.

Facing challenges

As a family, we’ve started to learn to live with the diagnosis. We make sure Mia is never too tired out physically, or from lack of sleep, as tiredness can be a seizure trigger for her. We constantly check her temperature when she’s ill, as we know that this is another trigger. We’ve learnt more about the signs of seizures – for example, Mia looks up to the left when she is just about to have a seizure, so we know to help her to lie down so she doesn’t injure herself.

Thankfully, Mia hasn’t had a seizure for nearly a year now, which is the longest she has ever been. We seem to have found the correct medication combination for her at the moment, which has allowed her to flourish in herself, too.

While we’re enjoying this time, we live in constant worry, which is so challenging. That worry is always there at the back of your mind, every single day. It’s always a balancing act, because going anywhere that Mia finds fun is a worry – she’s had seizures at the top of a slide in a park before, at a disco, at theme parks. We avoid fair-ground rides now – she accepts it and openly says ‘I can’t go on that; it will give me a seizure’. It’s so heart-breaking. These are just ‘normal’ activities for a child her age to be doing, but for Mia, there’s always that chance she could have a seizure.

A loved little sister

Mia has an older brother, Sam. They love drawing together, reading their favourite books (Dogman) together, making videos, going to the park and spending time with their cousins. Sam is very protective of Mia and always keeps an eye out for her. He worries whenever he sees an ambulance, but we tell him that paramedics and ambulances are amazing, as they’re helping Mia when she is in need.

We make sure to make time just for Sam. Me, Gemma and Sam went to Harry Potter World last year. He loves Harry Potter and was overjoyed. It was so lovely for the three of us to spend quality time together.

A little girl with a great sense of humour

Mia struggles with her reading and concentration and this has become more difficult for her as she’s got older. However, she doesn’t let Dravet Syndrome slow her down. She tries so hard at the mainstream school she attends, but sometimes, if she hasn’t had enough to drink, her medication causes her to zone out.

She enjoys ballet, loves fairies, animals, friends and family and despite all that she goes through, has a great sense of humour.