Former Derry GAA footballer and hurler Liam Hinphey leads epic challenge to run 10K every day in May for Dravet Syndrome UK

Former Derry GAA footballer and hurler Liam Hinphey and over 40 of his family and friends are taking part in an epic challenge to run or walk 10K, 5K or 2K every day this May to raise funds and awareness of Dravet Syndrome, a rare, life limiting form of epilepsy which affects his son.

Liam is aiming to run a staggering 10k every day, which means by the end of the month, he will have completed the equivalent of over seven marathons. Liam’s fellow participants, including his wife Clare, will be either running or walking (or a mixture of both) 10K, 5K or 2K per day.

The #EveryDayinMay4Dravet challenge raises awareness and funds for Dravet Syndrome UK, a charity which supports Liam and Clare’s seven year old son, also called Liam.

Little Liam lives with Dravet Syndrome, a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties. Dravet Syndrome occurs in around 1 in 15,000 live births in the UK.

ABOVE: Liam Hinphey Jr pictured with his granny Margaret Dolan.

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.

Liam was diagnosed with the condition at the age of two after months of seizures and ‘blue light’ ambulance dashes to hospital. To date, the family has called over 30 ambulances and Liam has been admitted to intensive care eight times.

He has problems with mobility, speech, eating and sleeping and requires 2:1 care, all of which are part of how he is affected by Dravet Syndrome. Liam also is currently waiting for an autism assessment.

Dad Liam, who is from Dungiven, says: “We’re taking part in #EveryDayinMay4Dravet to raise funds and awareness of Dravet Syndrome and how it affects families like ours. Dravet is so much more than seizures and though Liam has seizures slightly less frequently now than in the early years, his behaviour has become more challenging and of course he is physically bigger, and so the need for support becomes even greater.

“Dravet Syndrome UK has provided a lot of support to our family and also friendship with other Dravet parents. We see the positive impact the charity has had on families, so we're keen to raise much needed funding to give something back to the Dravet community.

“Our Liam has been through really tough times in the past with countless ambulance trips, intensive care stays and extremely life threatening seizures, but he's come out the other side of them all. He has so much resilience and we will be thinking about his resilience to help us push through and meet our targets every day in May. We're going to need all the support and encouragement we can get to keep us going through this almighty challenge, so please dig deep to spur us on!”

Over 430 runners are taking part in the #EveryDayinMay4Dravet challenge across the UK and across the world.

Galia Wilson, Chair of Trustees at Dravet Syndrome UK, said: “We are so grateful to Liam, Clare and everyone who is taking part in this epic challenge, raising funds and awareness of Dravet Syndrome. As a small charity, all donations received make a huge difference in helping us to continue our vital work supporting and empowering families, educating professionals and funding research. We’re so thankful to them and to everyone who is taking part or digging deep for #EveryDayinMay4Dravet.”

You can sponsor Liam and his fellow runners here

More information about Dravet Syndrome here