Frank lives with his parents, Katie and Lawrence, his 3 sisters and a brother. His first seizure was at 4 months old. Katie shares their story.
When we found out we were expecting our first child we couldn’t have been more excited. It was to be the first baby in the family and everyone was over the moon. The pregnancy went well and in August 2014, our beautiful baby boy was born.
We lived in our happy perfect little bubble for 4 months and 2 weeks, until our worlds changed forever.
After a lovely day visiting friends, a few days before Frank’s first Christmas, we came home and gave him a bath. When we got him out and laid him on the changing table we knew something wasn’t right. Firstly, he went limp and then the left side of his body began shaking rhythmically. We knew he was having a seizure and we called for an ambulance. The seizure failed to terminate by itself so the paramedics gave him rescue medications and we were transported to the local resus unit.
For some reason, after a few days in hospital and Frank making what appeared to be a full recovery, we felt like everything was ok and put it down to a febrile convulsion which we were told can be quite common for children. This was until the same thing happened a few weeks later and then again and again and again.
Getting a diagnosis
After tests at Great Ormond Street Hospital, when Frank was 9 months old, we were told he had Dravet Syndrome.
The neurologist tried to explain to us all about his condition but after the words ‘life expectancy’ had been uttered, everything became a blur. We were told that Frank had around an 80% chance of surviving until later childhood and that his development would begin to deteriorate as well as many other things such as speech and mobility.
As new parents we suddenly felt completely out of our depth and utterly lost.
In the early days we found his diagnosis incredibly hard to deal with and spent a lot of time emotionally mourning the life we thought we had lost and had hoped for, for our little boy. We wish that we could have had a snapshot of his life now to show us that it was not only going to be ok, but it was going to be utterly wonderful. Having a child with Dravet syndrome has taught us so much about life and has definitely made us appreciate so much that we had previously taken for granted.
Facing the challenges
Frank has fought some incredibly tough battles in his 8 years on this planet, including 2 stays in intensive care on life support, one of which we weren’t sure he would pull through. He has had over a hundred seizures and his life is affected daily by his condition because of everything surrounding it, such as heart problems, ADHD, autistic traits, sensory processing disorder, receptive language disorder, feeding problems, severe hypermobility, a low immune system and curly toe syndrome.
When your child is only 9 months old and you’re told that they may never walk or talk, every milestone feels like a miracle. We know Dravet Syndrome is a spectrum condition and it affects each individual in different ways, but seeing Frank write his name all by himself this year brought us all to tears – it’s something we didn’t imagine he would ever do.
He is the happiest kid I’ve ever known and has a fantastic sense of humour. He absolutely loves music and movies and knows everything there is to know about Disney! His first question to everyone he meets is “what’s your favourite movie?”
Frank is currently in a mainstream school and has made so many friends there. He has an absolutely incredible 1:1 who we all have such a special bond with.
Frank has a wonderful relationship with his 3 sisters and brother and is so gentle and affectionate with them.
We are fortunate enough to have such an incredible family around us who are there for us every step of the way. During the first 4 years of Frank’s life, we felt we were in crisis mode, with seizures being at the forefront of every thought. Without our incredible family and friends we really don’t know how we would have coped.
Support from Dravet Syndrome UK
Dravet Syndrome UK has been such a huge support to us, providing so much help and support along the way. The yearly trips to Center Parcs have been our safe place and we look forward to being around other families that really understand us and our lives. We were also gifted a night seizure monitor for Frank by DSUK, which we are incredibly grateful for.
To the future
Frank has currently been seizure free for 2 years and 9 months and for this we are so incredibly grateful. We have close contact with his epilepsy nurse who looks at his weight and dosage of topiramate and sodium valproate every 6 month and adapts accordingly. Prior to this he had tried all other medications that were available at the time. Back then topiramate was the last medication he could try other than going on medication trials at GOSH.
I really feel that keeping a close eye on Frank’s weight and adapting doses has been key to keeping him seizure free for such a long time. However, we know that the seizures could return any day, so for now we are living in the moment and making the most of the time we all have together.
Frank is our miracle, every single day. He has taught us to be so grateful for everything we have and he really does make the world a better place with his beautiful nature and cheeky personality.