Hi everyone,

This year I’ll be taking on a huge personal challenge – running my very first ever marathon, the Dublin City Marathon! ‍♂️

I’m not just running for myself. I’m doing it in honour of two absolute legends, Tommy and Grace. Their strength, spirit, and positivity have inspired me, and I want to dedicate every kilometre of this run to them.

Through this GoFundMe, I’m hoping to raise funds in their name. Every donation, no matter how big or small, will help make a difference.

Thank you so much for your support

below I have added a message from Tommy and Grace’s Mam and Dad of exactly how Tommy and grace go about every day life and how hard it must be… not only for them but for their Mam (Liz) , Dad (kevin), family and friends.

Tommy, 9 and Grace 8 both have a mitochondrial disease caused by mutation of the MTRFR gene. This is extremely rare, with only 4 known cases in Ireland. It causes a significant visual impairment for both of them and means they have to use a variety of aids to mobilise including leg braces and wheelchairs. Their condition is progressive and degenerative and is quite unpredictable. Worst of all, it's a life limiting condition.

Later this year Tommy will have to have a NG feeding tube inserted in order to maintain and increase his weight and Grace will have surgery on her legs and feet in the hope of keeping her mobile for as long as possible.

They have to attend numerous appointments a week across three children's hospitals and the disability service Tallaght as well as extra physio and equine therapy. But despite all their challenges they're great fun and really just love going to school, playing with their friends and spending time with their family. They're really funny and fun loving kids and we just always are striving to make the most of everything and give them the best and most normal childhood that we can.