May the 15th is international MPS/ML awareness day. As you all know by now Ethan has Hunter Syndrome, what you may not have known is that Hunter Syndrome is also known as MPS type 2.
This is a very special day for us. This is a day where we generally ask friends and family to help spread awareness.
It costs absolutely nothing just a small bit of your time and perhaps a photo shared onto your own social media sites.( Pop on a bit of Blue, here in Ireland and England- we go ‘blue’ while everywhere else its purple, so either colour is just fine! #mpsawarenessday2015 , tell someone about Ethan while you’re at it, share a post, a photo anything to help raise awareness—thank you)
This May 15th, we along with other families have been invited to Áras an Uachtaráin, which is our Presidents house, to help raise awareness of MPS/ML. Amazing isn’t it?!
Oh this will be amazing…amazing if Ethan doesn’t kick the President –considering the President isn’t a tall man, there is every chance Ethan will believe he is a fair target.
Yes, amazing it will be…amazing if Ethan doesn’t tell the President to ‘fug off’- but we think we will have this covered, we plan to loudly ‘repeat’ Ethan; “FOOD, you want is it Ethan”, until the President gets the hint and moves on to greet the other families.
Amazing altogether this will be…amazing if Ethan doesn’t roar “No not you” as soon as he sees the President approach him- honestly, we’ve no back up for that… yet.
Oh yes it sure will be amazing…amazing if Ethan doesn’t get impatient waiting , amazing if Ethan doesn’t have the mother-of-all meltdowns and throws a few of his best moves, (usually reserved for the poking and prodding nurses and doctors), at everyone and anyone within his reach—mainly D and I, I hope.
This May 15th will be a day we all remember, it will be an amazing day. The President will get to meet the one and only Ethan…unlike so many of us, Ethan will be himself, isn’t that AMAZING?!!!!
MPS/ML AWARENESS DAY IS MAY 15TH— GO BLUE/PURPLE FOR ETHAN AND ALL THOSE LIVING WITH MPS/ML –THANK YOU X