A Birmingham Dad, whose twelve-year-old son has Dravet Syndrome, a rare, life-limiting form of epilepsy, is backing a UK-wide campaign to raise awareness of the condition to help improve diagnosis and care.
Adam Shirwa, who lives in Rubery, is among those helping charity Dravet Syndrome UK to spread the word and raise vital funds by sharing their stories during June, which is Dravet Syndrome Awareness Month.
Although officially a ‘rare’ condition, occurring in around 1 in every 15,000 live births, Dravet Syndrome is one of the most common genetic epilepsies, as well as one of the most treatment resistant. In around 85% of cases, it is caused by a mutation in a gene known as SCN1A.
It’s not uncommon for individuals to have multiple seizures day and night, in some cases hundreds. There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
Epilepsy is just one part of the condition. As well as seizures, Dravet Syndrome causes learning disability and a spectrum of associated conditions, which may include autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding and sleep.
Adam’s son, Mo, had his first seizure at six months old and was diagnosed with Dravet Syndrome at age one.
Adam says: “Mo’s first seizure was an experience I will never forget and it will always stay with me. He was 6 months old. He started shaking against me – I was terrified and I didn’t know what to do. I hadn’t seen a seizure in ‘real life’ before, only on television. I didn’t know what was going on.
We were blue-lighted to hospital, where we were told that the seizure was a febrile convulsion, which was considered ‘normal’, and we were sent home.
But, from then on, there wasn’t a week that went by where we didn’t visit the hospital. Mo was averaging around 3 seizures a week. It became obvious very quickly that there was something else going on.
About 6 months after Mo’s first seizure, I was out shopping with him in Birmingham city centre. He had a huge seizure that lasted for an hour.
In hospital, I sat in a corner of the room while Mo was having repeated seizures. The doctors and nurses were surrounding him. I vividly remember the feeling of dread, waiting for one of them to turn to me to say that we had lost our son. Eventually, they were able to stabilise him and he started to recover.
We were very persistent in pushing the doctors to find out what was going on. The neurologist said he was going to do a genetic test, not because he thought Mo had a genetic condition, but just to rule it out. We received the result around 3 months later, which confirmed Dravet Syndrome.”
Because children and adults with Dravet Syndrome have such complex medical needs, often requiring emergency care, lack of awareness can make living with this devastating condition even more challenging for families. For example, some commonly used epilepsy medications, known as sodium channel blockers, can make seizures worse for those with Dravet Syndrome.
By raising awareness of the condition, Dravet Syndrome UK hopes more people can receive an earlier diagnosis and get timely access to the treatments, therapies and support they so desperately need. The charity also wants to increase understanding about the huge impact that Dravet Syndrome has on the lives of families, as they often struggle to get enough help.
Adam continues: “While we definitely never wanted this for our son, having a diagnosis meant we had a direction. Once Mo had received a diagnosis, the neurologist changed him onto more appropriate medication. I turned to the charity, Dravet Syndrome UK, whose website has been extremely useful in helping me to understand the condition and keeping me up to date with new research and developments.
Living with Dravet Syndrome has meant that Mo hasn’t had a ‘typical’ childhood. A lot of the things that others take for granted haven’t been possible. For example, the way sunlight moves across the grass could trigger seizures, so we’ve never been able to spend much time outdoors or at playgrounds with him.
Mo will become a teenager in just a few months and it is now that I feel the gap between him and his peers has really opened up. He has the mental age of around a 4 or 5-year-old. Though this is difficult for us, Mo is none the wiser and other children, like his cousins of a similar age, have now started to ‘look after’ him when they play.”
Adam and Mo are among those helped by Dravet Syndrome UK. As the only UK charity dedicated to supporting those with Dravet Syndrome, they provide emotional, practical, and financial support for nearly 600 families with the condition. The charity provides education and information for professionals and also funds research into the condition, bringing hope for the future.
Galia Wilson, Chair of Trustees at Dravet Syndrome UK, says: “Dravet Syndrome is a rare and devastating condition which has a huge impact on those affected. We are joining with families across the UK, who are bravely sharing their stories, to raise much-needed awareness, with the aim of reaching even more people in need of our vital support.”
Early signs of Dravet Syndrome include prolonged seizures (often triggered by fever) in early infancy. If you suspect that your child has Dravet Syndrome, you can ask your GP, paediatrician, or epilepsy consultant if you have one, for a genetic test.
To find out more about Dravet Syndrome or to support families living with the condition by making a donation to Dravet Syndrome UK, please visit www.dravet.org.uk or email the charity at: info@dravet.org.uk
Join the conversation during Dravet Syndrome Awareness Month in June at #DravetAwarenessMonth
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