Yep that sure is a big word! Ethan has MPS type 2-Hunter Syndrome. It is a rare disease and one many people including doctors will have never have heard of.
There are 2000 boys (2 girls) living in the world with MPS type 2.
Rare Diseases Day is important to me and our family as it is a day where the world acknowledges that there are many living with rare diseases throughout the world.
It is our chance to create awareness and to let the world know that having a rare disease is not that rare! It is also a huge opportunity to educate doctors, nurses and those in the medical fields to become aware of some of these diseases which are very often misdiagnosed or worse undiagnosed.
I didn’t want to give you all the statistics and bore you with facts so I have written what MPS stands for in our home!
M - is for ‘Munching’ Boy does my Ethan LOVE his food and your food and that guy's food and….
U - is for ‘Unique’ Need I say more?!
C - is for ‘Cute’ Yes Ethan is cute - to quote his Grandad W “He’s a cute little yoke, that one!”
O - is for ‘Occupational’ Ethan has taught us all about occupational hazards in the workplace and in the home!
P - is for ‘Pulling' Ethan is great at pulling at things he really shouldn’t; his speciality is pulling the seatbelt from behind you while you drive!
O - is for ‘Outbursts’ Ethan keeps them regular, just to keep me on my toes!
L - is for ‘Laughter’ Ethan knows how to laugh, you gotta hear it to love it!Ethan has shown us how to laugh from the tip of your toes right out to the top of our heads!
Y - is for ‘Yes’ Ethan’s absolute favourite word; one he has never misused or forgotten!
S - is for ‘Santa’ Who apparently can randomly pop into conversation, any day, anytime and anywhere, especially if Ethan spots a man who may or may not have weight issues!
A - is for ‘Alternate’ Alternate plans must be run by Ethan, over and over…
C - is for ‘Cartoons’ You name the cartoon; we know it… intimately!
C - is for ‘Certainty’ Not at this abode! Expect the unexpected with Ethan around!
H - is for ‘Houdini’ Houdini’s got nothing on our Ethan…
A -is for ‘Art’ Ethan has been known to dabble in art…on the walls, on the floors, on the tables, chairs ,on his siblings...
R - is for ‘Roar’ Ethan has breathing issues…I began to differ…put on Spongebob…show him a cake….he is Ethan hear him roar!
I - is for ‘Infinite’ Did you know that there are many places food can be stored...behind the chair, in a teddy, under a pillow..
D - is for ‘Doh’--- Ethan’s idol is Homer Simpson…no one, no one makes Ethan laugh more.
O - is for ‘Open’ Nothing is sacred if you leave it open your handbag, a packet of biscuits…always close doors too or you’ll be having a workout session without your consent!
S - is for ‘Sweets’ Ethan can sniff them out even if you have left them in your car!
I - is for ‘Ice –scream’ If Ethan sees it, it is his…he likes to lick it, suck it and wear it…which he does rather well!
S - is for ‘Sh1t’---In ALL it's context….
Most importantly, MPS has taught us to ‘BLOVE’…blove what we have and who we have in the here and now...
Obviously this is NOT what MPS stands for, please feel free to follow the link to find out what MPS is…www.mayoclinic.org/diseases-conditions/hunter-syndrome/home/ova-20165659
Wear that you Care this Rare Diseases Day -February 29th visit www.rarediseaseday.org
Help us stand together - alone we are Rare , together we are strong.
If you would like to write a blog post about a Rare Disease please email us.
If your child has a diagnosis of Cerebral Palsy what level of the GMFCS are they?