Harry had his first seizure at six months old. He lives with his little sister Lilly and Mum Emma in North Wales. Emma shares their story below.
The early years
Harry had his first seizure at six months old. Straight away my mum, dad and I raced him to A&E in their car, we didn’t know what was wrong with him. When we got to A&E the medics all started working on him to try and stop the seizure, it was just so frightening, the worst moment of your life as a parent. The seizure lasted for fifty minutes. They kept him in for a couple of days and we just thought it was febrile convulsions as my cousin had them when they were younger.
But as time went on, and more seizures happened, the longest lasting for two hours. In those early days, it was normal for us to be blue-lighted to A&E five or six times a month.
We’re in very different terrain now as, unless the seizure goes on for a long time, we are able to manage Harry’s seizures at home.
After a while, Dravet Syndrome was mentioned to us and we had genetic testing and an MRI, and after a long wait of 10 months, the results came back and it was confirmed that Harry had Dravet Syndrome.
Coping with the challenges of living with Dravet Syndrome
My dream was always to be a mum and Harry was worth the wait. As time went on, Harry’s behaviour became harder than the seizure side for me. He is very complex in his behaviour and when out in public it was hard to control his hitting out and meltdowns.
This made me more isolated, and I found it really hard going out and some days out left me crying. I had a picture in my head of how I wanted day to go, and Harry had another idea. But I tried to overcome this, and kept trying new places, in the hope that Harry will learn new skills and hopefully have fewer meltdowns.
Harry used to be a good sleeper when he was younger but looking back, I think he was having more seizure activity than I realised. The medicine had so many side effects. Then he stopped his good sleeping and would wake up early in morning and be awake all day, he doesn’t stop all day either. Safe to say that I have some days where I’m so exhausted, but I am lucky to have the best support network with family and friends.
There are lots of challenges in the Dravet world, and I couldn’t have done it without the support of Dravet Syndrome UK and, even more so, the mums I have met along the way. To be with other parents who just get it and can give you advice when you need it, that listen to you and meet without kids to have ‘us time’ and catch up.
Every day is different, but always a challenge. Some days we laugh together, some days we cry together, but I always like to thank my lucky stars I have my little team still together.
Harry’s sister Lilly has it very tough, as I can’t just go out, it all has to be planned and sometimes days out are cut short due to a seizure or his behaviour. She amazes me with how, no matter what, she sees Harry as just Harry, not different.
Lilly struggles sometimes, but I think copes very well. Her life is very different, compared to her friends. I think having a brother with special needs has made her even more caring.
The rest of my family just all pull together, and rally round when needed. I think we all wish that we could take Dravet Syndrome away from Harry, but we can’t change the path we’re on, so we enjoy the time we have.
The best advice I have for others in our situation, is to meet other parents and talk, join the charity and be part of the Dravet Syndrome UK family.
Harry is a happy, mischievous, cheeky boy, who could light up a room with his smile and his dancing and singing. He has the most infectious laugh and even though some days are hard, he always puts a smile on our faces and brings the most joy to all our lives. He has taught us how important life is and to enjoy each day. He loves hoovers and anything to do with water, but most of all Harry loves family time.
Emma took part in a Dravet Syndrome awareness raising campaign in 2022. You can read the article in the Rhyl, Prestatyn & Abergele Journal here.
Every Dravet Syndrome journey is unique. Read more stories here.
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