It’s the same date every year.
15th of May.
I have a son; in fact I have three.
In 2008 my world changed forever.
When my eldest son was born, he was a 9lb chubby boy, with ten little fingers and ten little toes, a beautiful round nose, big blues eyes and a smile that was ever present.
My Ethan, my first born son. The boy who made me a mammy. I fell deeply in love with him and finally got ‘it’.
I understood a mother's love right there and then, seconds after he was born.
He spoke early, he walked early, he laughed, crawled, sat up and all those things us first time mammies, especially, look out for and remember.
He was a good baby.
The only worries he ever brought me were colds, flus and chest infections.
By the time he was three months old he had to spend a week in hospital. The fear I had as the doctors couldn’t really tell me what was wrong, was overwhelming.
He was projectile vomiting and he had yet another chest infection.
“Is your house warm? Well ventilated? Do you have carpets?” “Pets? Have you pets?” Doctors asked over and over.
I began to think it was my fault.
My fault he was so sick, so often.
I was 22 years old when I pushed Ethan in his soaking wet buggy down to our local clinic.
He was 18 months old and he suddenly stopped talking to me.
I was panicked and convinced he had a hearing issue.
“Ok, well yes it's quite common, we will give him a hearing test. Has the asthma cleared up for him?” The public health nurse asked.
“No. And I'm not sure it ever will. He's had loads of chest infections this winter and even in the summer he gets them. That can’t all be asthma, it doesn’t makes sense”
She politely told me to relax and perhaps I am a bit over anxious, considering my age and all. She also wondered what my mother thought.
Ethan had grommets inserted - not once, not twice but four times and on the fifth time I decided; no more grommets.
By the age of five Ethan had developed his own unique way of walking; always on his toes.
His belly stuck out like a man who loves a beer or two.
His speech was slow.
Potty training him came and went; almost like he forgot how to use the toilet.
His hearing aids didn’t seem to work often.
His constant chest infections meant he sounded like he had a hard time breathing; yet when a doctor would listen to his chest they would tell me “it’s all in his upper airway, he’s fine. He may need his adenoids out in the future but he’s fine”
His hands were huge and his fingers, ever so slightly curled.
His feet were tiny and very wide; it was so hard to find shoes for him.
His eyes were so big and beautiful but nothing like I had ever seen before.
His hair was as wiry as a brush.
His inhalers for his asthma didn’t seem to do much in the way of preventing all these colds, flus and chest infections.
His behaviour, no matter which technique I used to correct him, never improved, he was becoming more and more unmanageable.
He liked peculiar things; a cartoon playing on a loop, or flicking light switches or eating raw sausages or kissing his hands then suddenly he’d bite them.
“Okay, Ethan has classic Autism, Sensory processing disorder, attention deficit disorder and oppositional defiance order” The many doctors informed me.
“All children are different. Autism can and does cause all this” I was informed very matter of factly.
“I don’t agree”
Doctors can be very rude to young mothers. I was almost laughed at for arguing with them or having a different opinion to them.
I knew I wasn’t a doctor; I knew, I didn’t know anything of those labels they were using to describe my Ethan but; I knew my Ethan and there was something else going on.
Finally in March 2008 I sat with a paediatrician. A kind caring paediatrician who listened to me.
Ethan was 5 years and nine months old.
By the time Ethan was 5 years and ten months old that same paediatrician confirmed that I was indeed correct.
“Go home and love him; you won’t have him for long”- that was the bottom line of my conversation with him.
There was no great treatment plan.
And considering Ethan's age; he was unlikely to ever get the enzyme replacement therapy which buys kids like Ethan (those with MPS type 2) time.
In March 2008; I was told my beautiful Ethan would continue to decline, he would unlearn everything he knew as his abilities would fade away leaving nothing but a shell and then that shell would become too frail and he would leave this earth, more than likely by the age of 12.
Ethan was diagnosed with MPS type 2; Hunter Syndrome.
‘Not my son and not on my watch’
I fought tooth and nail and in September of that same year, Ethan received his first ever enzyme replacement therapy; which meant I had bought us time.
May 15th is the one day of the year that I acknowledge this story; the hardship of coming to a diagnosis; I will tell and re-tell this story over and over until something changes.
Until the medical professionals listen more to the parents and less to their books or the chances of a child with such a rare condition coming into their offices for years undiagnosed simply because the doctor didn’t think to check for rare conditions.
I don’t want another parent to go through what we did just to get a diagnosis.
In most countries, children like Ethan are diagnosed between the ages of 18 months and three.
Ethan was almost 6.
That meant hunter syndrome had 6 years to do as much damage as it could to him before we got the chance to slow it down.
A chance I had to beg for despite numerous doctors seeing Ethan for years without ever really listening to me and my concerns.
I am bitter about that and I think I always will be.
May the 15th is the one day where I can acknowledge all the love, support, wisdom and honesty within our community of MPS.
It’s a day when even strangers wear purple to honour my son and those all over the world with MPS; I cannot put it into words how that actually feels but I'm going to try.
Imagine you have been struggling for months on end. You’re anxious.
You're stressed but most of all you’re heartbroken but you still have to get up and get on with things; because that is life and that is what life demands of you.
You turn on your phone, laptop or whatever and there you see support. A sea of purple with beautiful encouraging words for you, your son and your family.
You even see neighbour wearing their purple and posting it to social media in order to help spread awareness ...your heart literally skips a beat, there is nothing greater than solidarity --
Each family living with MPS needs to feel their community behind them, they need to feel less alone, less isolated and they need to know that those without MPS care too.
Our children are dying, there isn’t enough research, there aren’t any cures and there aren’t many funds going into MPS- which is devastating to families like mine.
With awareness can come interest, with interest can come funds, with funds can come research and with research well; with research can come a cure.
People often ask what can they do to help --May 15th wear purple in honour of all those who have lived and who are living with MPS; tell someone about the little boy Ethan whom you read about.
Let people know MPS knows no religion, sex, region or race- it can affect anyone, it doesn’t need to have a history in your family, it can simply just ‘happen’.
Thank you all so very much.
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