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Dravet Syndrome: Former Derry GAA dual star raises awareness for rare condition affecting his five-year-old son


Liam Hinphey with his wife Clare and children Liam Jnr and Cara

Liam Hinphey with his wife Clare and children Liam Jnr and Cara

Liam Hinphey with his wife Clare and children Liam Jnr and Cara

An ex-Derry GAA dual star has told how he has called an ambulance more than 30 times over the course of his five-year-old son’s life — as he backs a UK-wide campaign to raise awareness of the rare form of epilepsy his child suffers from.

June is the official awareness month for Dravet Syndrome, a life-limiting condition which affects around one in every 15,000 live births. 

Little Liam — the son of former inter-county Gaelic footballer and hurler Liam Hinphey — was diagnosed with Dravet Syndrome after months of seizures and ‘blue light’ ambulance dashes to hospital.

Liam Snr and his wife Clare are now among those helping charity Dravet Syndrome UK to spread the word this month by sharing their stories.

Their son Liam has problems with mobility, speech, eating and sleeping, and he requires help from two carers at a time.

The couple, who are based in Dungiven said: “Liam has been in hospital so many times now we have lost count. We have called well over 30 ambulances in the last five years, and he had his latest PICU (pediatric intensive care unit) admission there on his fifth birthday, which was his eighth time admission to PICU.

“We have gone through so many different medicines to help control them, but we haven’t managed to find the right drug combination for him yet.

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“We are in A&E multiple times each year and meet different doctors, nurses and paramedics and we still have medical professionals saying they have never heard of Dravet Syndrome,” they added.

“We are extremely fortunate that our consultant had heard of Dravet Syndrome, which led to a quicker diagnosis and early access to support services.

“We would hate to think there are people out there who just haven’t been lucky enough to come across the right medical professional.

Raising awareness of our story, it may resonate with some people who have been diagnosed with epilepsy and may think they should have further genetic testing to see if they have Dravet.

“We are not telling our story for people to feel sorry for us. We are telling it for the undiagnosed and the newly diagnosed. There are people out there who know how hard it is to receive this diagnosis, there are people to talk to who will understand.”

Although officially a ‘rare’ condition, 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.

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.

Dravet Syndrome UK said that because children and adults with Dravet Syndrome have such complex medical needs, often requiring emergency care, lack of awareness can make living with the 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 shining a light on the condition, the charity hopes more people can receive an earlier diagnosis and get timely access to much-needed treatments, therapies and support.

Galia Wilson, chair of Dravet Syndrome UK said: “Scientific understanding of Dravet Syndrome has improved significantly during the past decade. The availability of genetic testing has helped increase diagnosis and now there are newer, more effective treatments available too.

“But wider awareness is needed to bring attention to these advances if they are to bring real-life benefit to as many patients and their families as possible.”

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, or epilepsy consultant if you have one, for a genetic test.

To find out more about Dravet Syndrome, please visit www.dravet.org.uk or email the charity at: info@dravet.org.uk

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