On the 1st of March 2025, Lara and I welcomed our beautiful daughter into the world. It was meant to be the most joyous moment of our lives but instead it was filled with fear and confusion as Julia was born with an incredibly rare genetic skin condition called epidermolytic ichthyosis.

Julia is one of two people in the whole of Northern Ireland with this condition and both have a slightly different genetic variant making it even more rare.

Julia’s skin is really fragile and blisters very easily, even from being held for too long. She also gets build ups of thickened skin which can be equally as painful and irritating for her. We spend hours every day looking after her skin, trying to make sure she is comfortable.

This May, I am running my first marathon and doing it to raise funds for this incredible charity - the EI cure project. Perfect timing as May is ichthyosis awareness month! When Julia was born, it was the EI cure project who taught us how to properly look after our daughter with evidence based care plans. Not only that, but they are also actively looking for a cure for this skin condition through research. All funds raised will go directly to active research projects - details can be found on the website.

We all love our girl so much and want her to be free from this awful condition. The only chance she has of that is if the EI cure project can continue their important work. Please help me raise as much as possible as I take on this mammoth challenge! Training has begun - follow my journey on Strava if you have it 👍