I glanced at him. Then at her.
She didn’t notice me.
I stood at the end of the corridor holding the door waiting for my very own whirlwind to catch up to me as he too had just had a meltdown and was now being carried calmly behind me in his daddy’s arms.
I watched as this young mother tried to reason, tried to explain and when all that failed she sighed, she rubbed her forehead and glanced at me.
She stood straighter and smiled at me.
She smiled at the woman holding the door staring at her child having a meltdown.
I felt my face heat up.
I had seen her and her son earlier in the clinic. I knew he had a metabolic condition and as I watched him, I began to wonder had he Hunter syndrome.
He was just like my little bundle of energy, whom we named Ethan!
I smiled back at her.
“Hey, I saw yous over in the clinic before, has your child got a metabolic condition?” Her Dublin accent was strong which forced me to concentrate. (Anyone who knows me, knows that I am absolutely desperate with accents and really need to ‘tune’ in to understand what’s being said to me…and yes, this ‘issue’ has caused me lots of embarrassing moments!)
I nodded. “Yeah, my son has Hunter Syndrome” I swallowed hard, trying not to sound full of self pity. This was our second visit to Temple Street hospital and I hated it. I hated the syndrome, the ’plan’ on how to live with the syndrome and I hated the hospital for making us come here and deal with our new reality.
“Ah, I am sorry to hear it . Yous must have gotten a shock, yeah” she nodded at her son who was now kicking her leg. “Ah Matthew will yiz bleedin’ stop it” she half laughed. “He has Hunters too, I am Emma” she put her hand out.
We stood talking for a good few minutes while Matthew continued to roar and shout. I was impressed with how she could converse, while being used as a punching bag and a sounding board. She never even flinched when he pinched her arm while she was trying to comfort me. She knew I was a ‘newbie’, she knew Matthew was not going to get any quieter the longer she talked to me, yet she stood there until she he meet Ethan and D. (Emma, thank you, thank you for our first meeting)
Every few months I would continue to meet Emma and Matthew around the metabolic unit in Temple Street hospital.
Our conversations would never last more than ten minutes due to both our boys and their constant running, screeching, kicking, laughing, pushing…you get the idea, I am sure!
In time, I could see myself in Emma; I became that mother who ignored the kicks to my thighs as I spoke with other newer mothers along those corridors. I became the mother that smiled when I spotted the ‘newbie’ staring at Ethan and I , while her little boy trailed behind her and was still able to understand rules and young enough to pick up and carry.
I met Emma and Matthew more recently.
We walked into the metabolic unit, well, I say walked, Ethan burst through the doors ready to do whatever he could while the doctors and specialists tried in vain to record something as simple as his weight.
I spotted Emma and Matthew. I knew he had declined. I knew he wasn’t doing as well as Ethan and I knew his mammys heart was breaking. I took a deep breath and walked straight over to Emma.
We hugged. There was no need for words.
I could see Matthew, sitting quietly, staring off into space. My heart broke in that moment as I remembered the kicking, screaming, the never sitting Matthew.
Ethan was going from activity to activity but having no real interest in anything only his iPad. I knew Emma could see Ethan’s decline too but we both knew Matthew had declined much faster than anyone, including the experts, had expected.
“He will soon need a wheelchair full time, not just now and again” she stated as she spoon feed him thickened water. “His swallow is gone” her eyes dark and heavy with sadness as her voice no longer had a bounce to it, it was just flat and matter-of-fact.
There was nothing I could say. I wanted to scream how unfair this is. I wanted to cry for her, for Matthew and for us and Ethan. I wanted to run away and not to sit and hear how much Matthew has declined; for it cuts me far too close to the bone.
I am not privileged enough to be able to remove myself from Matthew’s decline, nor am I fortunate enough to know that I will never have to be in Emma’s position…
Matthew no longer receives his weekly ERT. Matthew is now tube fed. Matthew’s ability to walk is declining as well as his health.
Hunter Syndrome is taking more and more from Matthew and his mammy, his daddy and his little brother, each and every day.
The fact is Hunter Syndrome won’t stop taking from Matthew, from Ethan and from all other little boys living with the syndrome all over the world.
Emma has told me all she wants is for Matthew to have a good quality of life for it is not about quantity of life…just the quality; which is something that resonates so strongly with me, for obvious reasons.
Emma needs a wheelchair accessible car, so she can make memories with her family and still bring Matthew everywhere they go.
I don’t know if you guys know much about the cost of these cars, but as with most specially adapted equipment, it isn’t cheap. A second hand one can cost at least 18,000 euro– Emma is trying to raise some funds towards this and I decided I would do my best to help; by writing this very honest piece about the reality of that word ‘progressive’ and just some of what it entails .
If you are in a position to help- that’s awesome but if you’re not, please share, please share this and let your friends and family have a read about the mothers who know that their children are being stolen bit by bit by an incurable cruel syndrome, called Hunter Syndrome.
Emma has set up a GoFundMe account in the hopes of raising some money towards the car.
If you’d like to read more about Matthew you can follow along here on his page, I warn you though, he is a pretty cool dude!
Thank you all so much for taking the time to read this; I know it isn’t an easy read.