On this International Day of Families I wanted to share with you all a little bit about my family.
This is three days before my eldest son turns 16 and it will be two days after his big super 16th birthday celebration.
This is also the day allocated to kiddies like my eldest son, it is MPS/ ML Awareness Day.
It’s a day where I am encouraged to tell you all about MPS /ML…
My son, Ethan has MPS type 2 – Hunter Syndrome.
I can tell you all about my darling son; he is a living hero.
He has had more hospital visits, operations and weeklong stays than any person I personally know.
He still smiles at the nurses, not so much the doctor’s.
He’s pure of heart.
He’s full of empathy.
He’s full of devilment.
He’s a whirlwind.
He’s not able to sit in one place for long.
He’s quick to anger but just as quick to laugh. He’s friendly.
He’s a Simpson addict, well he’s a cartoon addict, if I’m honest.
He’s cute; he knows how to make anyone forgive him anything.
He’s a whizz at jigsaws.
He’s the fastest thing on two legs if he thinks you’re chasing him…
Yes; that is my boy Ethan.
Let me now tell you about Hunter Syndrome.
It’s taken Ethan’s ability to run, to play, to draw, to speak, to eat, to walk, to use the toilet unaided, to understand.
Hunter Syndrome is taking everything from my son and leaving a shell of the boy he once was.
I am watching my child disappear right before my eyes.
Every May 15th, for as long as my son has been diagnosed, I have tried to raise awareness.
I’ve talked and written about the signs and symptoms regarding Hunter Syndrome.
I’ve discussed the rarity of the syndrome.
I’ve discussed what it does to my son and other boys like him.
This year I decided to be blunt.
This is about as blunt as I can be.
I think people expect a ray of hope at the end of pieces like this but there isn’t one here, for our family nor for Ethan.
There is no magical cure.
My son could live for another five years or five months.
But with each passing month ,the change in him is more complex, more dangerous and takes more of him away from us.
He’s almost 16.
I live in a world where almost 16, is a ‘good age ‘, how messed up is that?
But I have to accept it. I don’t have a choice. I can and do often wish things were different but if I spend my time doing that, I’ll miss the laughs Ethan shares with us.
Hunters takes so much from our family that it forces us to spend time hating it.
What a waste of energy, eh?
Hating something that has ravished your child’s mind and body yet it is so much a part of him.
It’s an emotional rollercoaster.
There are no, “how to” books.
I know without Hunter Syndrome, Ethan would not be Ethan; that’s the struggle I personally have, how can I hate Hunter Syndrome?
There’s a cure around the corner, but my son will never benefit from it.
I don’t know how to feel about that.
A real cure .
But my son can’t and won’t have it as the syndrome has already ravished so much that he sometimes forgets who I am.
My son , almost 16 still laughs, still plays and still watches the Simpsons.
This May 15th I will once again try to raise awareness for him and others like him, I will also do my best to help fund the cure but I won’t follow the results too closely as it’s too hard to watch for me and my family.
May 15th is International Day of Families; take a few minutes to think of families like mine who can’t even take the whole family out without planning and replanning due to accessibility (but that’s another post for another day.)
Please learn about Hunter Syndrome as it can occur in any family ,in any part of the world. Wear purple or blue for MPS Awareness Day this May 15th.
Thank you for reading.
This was published originally on Firefly