Aberdeen mum backs campaign for rare life-limiting condition affecting her son

Tracy Bruce's young son Drew lives with Dravet Syndrome and they are backing a new UK-wide campaign
-Credit: (Image: Dravet Syndrome UK)


An Aberdeen mum whose three-year-old son has Dravet Syndrome is backing a UK-wide campaign to raise awareness of the condition to help improve diagnosis and care.

Tracy Bruce, 40, who lives in Bridge of Don, is among those helping charity Dravet Syndrome UK to spread the word by sharing their stories during June which is Dravet Syndrome Awareness Month.

Dravet Syndrome is a rare, life-limiting, form of epilepsy which occurs in around one in every 15,000 live births and is one of the most common genetic epilepsies.

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It is also one of the most treatment resistant, and in around 85 per cent 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.

Tracy’s son Drew had his first seizure at ten-months-old. He was finally diagnosed after months of numerous seizures and ‘blue light’ ambulance dashes to hospital.

As well as seizures, Drew has global development delay and significant problems with mobility and sleep, all of which is part of how he is affected by Dravet Syndrome.

Tracy said: "On one occasion, Drew had a seizure that lasted 45 minutes. It went on and on, during the emergency ambulance ride, in the hospital, and he ended up in intensive care.

It was so horrible and frightening, it felt like it would never end, and I honestly didn’t think I would be taking him home. 2022 was so hard, he was in and out of hospital.

"The volume of seizures has reduced a little more recently, but he still has seizures about once every other week. It’s enormously stressful as you don’t know when they are coming, you get no warning, so they can happen at any time.

"If he gets excited that can be a trigger, but other times there’s no obvious reason, he could be just sat playing with his toy cars for instance and he begins to seizure. When he has a seizure, I’m able to keep calm and deal with the situation at hand, you go into survival mode. But after the event, it hits you and you have a cry."

Drew had his first seizure when he was less than 12 months old
Drew had his first seizure when he was less than 12 months old -Credit:Dravet Syndrome UK

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.

Tracy added: "I really want to raise awareness so that people can be more accepting and understanding as to what life is like for families living with Dravet. We have an amazing consultant and a lot of other brilliant support in our lives, but some medical professionals have still not heard of Dravet and that needs to change.

"I’ve called an ambulance before and the paramedic hasn’t heard of Dravet, and you end up having to explain what it is and what medication you know is suitable and it can be very scary when you are having to do this while your child is having a seizure."

The Bruce family 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 more than 550 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 and Trustee, Dravet Syndrome UK, commented: "Dravet Syndrome is a rare and devastating condition which has a huge impact on those affected.

"We are joining with families across the UK to raise awareness and share little moments of what it's like to care for someone with Dravet Syndrome so we can reach 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 #DravetAwarenessMonth #LittleMomentsMatter.