I am a parent of a child with a terminal condition called Hunter Syndrome. I no longer pray for a cure. Terminal or life limiting conditions give you a perspective, one that’s different to most and one that you can’t really […]
This was hard to write. It is hard to read but if I’m going to share Ethans journey , I feel I must be honest. In honour of Ethan,T and all the other boys (and their families) who live with Hunter syndrome. […]
I am very lucky to have been given the opportunity to work with some of the best Family websites, such as Fireflyfriends.com, The Mighty.com, Herfamily.ie and most recently Familyfriendlyhq.ie Below are a few articles which have been published on these sites. I […]
May 15th was international MPS Awareness day. It was also, the 20th anniversary of the Irish MPS Society. To mark this huge occasion we (the society) were invited to our Presidents abode -Áras an Ùachtaráin, where we would meet Mrs. […]
As Friday the 15th of May approaches, I thought I’d write about MUCOPOLYSACCHARIDOSIS (MPS) and what it stands for in my life; M– is for ‘Munching’— boy does my Ethan LOVE his food and your food and that guys food and…. U– […]
