This year, me and Clare, along with a group of our very supportive family and friends, are taking part in Every Day in May 4 Dravet - where we'll cover either running, walking or cycling 10km, 5km or 2km every single day throughout the month of May. I'm doing 10km runs and Clare is going for the 5km. Each of us are choosing what will challenge us the most to do everyday in May.

We're raising funds for Dravet Syndrome UK, to support their vital work in bringing hope to families living with Dravet Syndrome through support, education and medical research. They have been at the heart of medical research for finding a cure for Dravet syndrome and have had made advances developing treatments in gene therapies and every penny counts. To find out more about their work, visit www.dravet.org.uk.

Dravet Syndrome is a rare, life-long and life limiting neurological condition with difficult to control seizures which are drug resistant, and it also encompasses intellectual disabilities. There are also a spectrum of associated conditions which include autism, ADHD, challenging behaviour and difficulties with speech, mobility, eating and sleep.

Our son Liam lives with the condition and his life (and ours) is affected by all the associated conditions that come with it. The charity has provided a lot of support to him and our family. They have provided us with various epilepsy/ saturation monitors, advice and guidance for managing Dravet, and friendship with other Dravet parents. We see the positive impact the charity has had on families like ours 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. All donations, no matter how big or small, are greatly appreciated and make such a huge difference. Thanks for your support!

Love Liam, Clare, wee Liam, Cara and our fantastic family and friends; Paul Dolan, Emma McCarren, Kevin and Julie-Ann Hinphey, Mary K Hinphey, Kieran, Lorraine and Donnacha Hinphey, Emer Hinphey, Kevin Craig, Caroline Morris, Sheena, Dara and Kiera McKeever, Niall and Claire Dolan, Lisa Smith, Brian and Donna Mullan, Shane and Grainne McCloskey, Conal and Aileen McCloskey, Brian McGuigan, Paul and Leon Sweeney, Mickey and Stacey O'Kane, Aaron and Judeth McCloskey, Kevin and Christina Farren, Mark and Bronagh Craig, Stephen and Ursula McGuigan, Paul and Rhonda Farren, Aileen and Fergal McGuigan, Padhraic and Alana Murphy, Kevin and Margaret Dolan.

You can read more about our Liam's journey at the link below:

https://www.dravet.org.uk/families/dravet-journeys/liam/