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Ethan is thirteen and has a rare genetic condition, Hunter Syndrome.

Ethan is thirteen and has a rare genetic condition, Hunter Syndrome.

Ethan Hunters Disease
The phone rang...
I wasn't expecting a call. I was not prepared for a pre arranged call, the kind I need in order to speak with the caller!
The toddler was screaming for more milk "get me the more mommie pwease", while the middle son, J was asking me repeatedly "why can't I just play a game of Minecraft " while promising "I won't argue again when it's time to turn it off, but let me have it for awhile mom, please, I won't keep nagging you either..please mom" I hadn't even answered him when he threw in "you're so mean. Can I go out on my bike then, can I, can I?" I glanced at the Irish 'Summer' brewing outside.
I rolled my eyes and made my way to the phone.
 
BANG...
Ethan had thrown 'Woody' Cowboy at the window narrowly missing J's head. " OW! Ugh...Ethan, tell him mom!" J roared.
Meanwhile the toddler found it all hilarious;"Ethie funny!" he laughed.
"No. No, not funny" I looked at the toddler.
I picked up the phone. "HELLO" I shouted above the; "mommies can I's " and the "Whoo hoo Woody Cowboys" not forgetting the "more milk mommy pwease's".
"Am I speaking to Ethan's mom, Geraldine?" the caller asked.
"Yes. J, J will you be quiet. Sorry about that," I turned my attention back to the lady on the phone.
"Ethan has appointments in Temple Street (childrens hospital) in November.."
"Yes, his MOT, so to speak" I covered the phone, "J, J will you get him milk"
Ever the opportunist he asked, "Then can I have Minecraft, please, please, please?"
I nodded...with no intention of giving him Minecraft...the little...
"Well we've a new team that would like the opportunity to work with Ethan and learn from Ethan" she was still talking when I cut her off.
"Yeah, yeah that's grand" I wanted her to end the conversation as it dawned on me Ethan had left the room.
In my house there is only one spot where you get coverage...for a mobile; my phone was not very mobile when on a call.  
She was still talking while I pulled the phone away from my ear and asked J, "Where is Ethan?"
"Dunno" he shrugged his shoulders while giving the now annoyed toddler his milk. "Too cold J, Dee Dee no like it" he spat it out.
"So what we are asking is that..." she was still talking. "Go get Ethan J" I pointed at the opened door. "Dunno where he is mam!" J threw his hands up in the air. "Follow the noise" I pointed towards the kitchen.
"Sorry, I didn't hear the last bit, could you maybe email me and I'll get back to you, the boys are.." she cut me off, "We are nearly there, just if you could.."
"MAM! UUGH MAM!" J came running back into the room, pinching his nose.
"Damn it! " I sighed.
"Sorry not you" I blushed as I heard her confusion
"Sorry Geraldine are you there?"
"Damn it!" the toddler parroted while throwing his milk over his head.
"Sorry, I have to go. Can you email me please?" I was loosing my patience.
"Oh okay, well just ...yeah it's not a big deal, we've asked others..."
Ethan strolled back into the room, covered in the brown stuff...it was everywhere..."Mickey mouse whoo hoo" he roared as he ran passed me and into the playroom...dropping blobs as he ran.
"YES. Yes, we'll do that" I hung up on her.
"J just stay there and keep D playing in his chair while I clean Ethan" I glanced around the room, not too bad only a few blobs.
I turned my attention to the playroom, Ethan was now jumping up and down screaming in delight at Mickey mouse ...the brown stuff had escaped his pants completely and was now being mushed further and further into the floorboards.
"Mom, mom...Ethan has left it in the kitchen too and the toilet, I think he has the runs again" J patted my back. "So, after you've cleaned up can I play Minecraft...'cos I've a cool house and some builders oh and mam you'll have to see 'Steve' and..."
"J, pet, please, please, be quiet while I clean, I will discuss Minecraft later ok" I patted his head, too tired to tell him for the 100th time not to talk to me while I am on the phone.
And so I began to coax a hyper Ethan out of his playroom with some silly notion that he wouldn't touch everything on route to his adapted bathroom...
 
Ethan is thirteen and has a rare genetic condition, Hunter Syndrome.
It affects every single part of him from his brain right down to his toes and everything in between. It is a life limiting condition. As he ages, he loses more and more skills, until eventually there is nothing left to lose.
 
J is ten and has ADHD, he is a brilliant 'big little brother' as we call him in our house.
 
The toddler is D and is 2 soon...but he would buy and sell you as soon as look at you!
 
My husband D is in his final year of college and studying 'nerd' stuff which I don't understand, but he loves it !
 
I am Ger.I blog about our life; how we are trying to live, love and laugh again since Ethan's diagnosis back in 2008.
 
Ethan has brought us on a journey, which we never thought we would be strong enough to take with him...but here we are!   
 
Later that night I opened up my email, apparently I had agreed to let a group of student doctors examine Ethan after he had done all his yearly tests.
 
Ethan's yearly tests include, heart, lungs,scans of everything, hearing, physio, occupational, speech and language... you get the idea.
 
Ethan has yet to actually cooperate with these tests...
 
Ethan isn't that verbal anymore...he tends to let his fists and legs do the talking...
 
Roll on November...
 
I actually laughed out loud.  
 
Kindly submitted by Ger Renton, who will be keeping us up to date on her crazy family life with Ethan & co.
Follow her on facebook at  "It's me Ethan"  and check out her amazing blog at geraldinerenton.com