From the sidelines

I knew nothing of medical trials until 2008, when Ethan was diagnosed .

I knew nothing about taking part in any such trial until we were offered the chance to in 2010.

Medical trials aren’t for the light hearted nor are they something that people really know about.

No one prepares you for a medical trial and all the feelings it brings.

No one prepares you for when your son isn’t a suitable candidate.

The medical trial is still ongoing to this day.


I scan quickly through the Facebook posts.

I can see there’s a video attached. I dare not watch it. Not today.

I look at the closed group notification I can see who has posted…if it’s a parent on the current trial; I won’t click in to see what they have written.

I see a few (parents) write ‘blogs’ or pieces about their new perspective on life; if the title mentions the trial- I will not read it.

I simply can’t.

It’s hard. It is so hard to read a piece written by a mother who once walked in my shoes; regardless of her child still having the same condition as Ethan – her child now has a chance at living.

I’m jealous and I can feel bitter. That’s the truth.

I struggle with my emotions , I am simply human.

I try to find some sort of perspective and lately I find myself thinking of those parents who never had the chance I have had since Ethan started his weekly ERT (the now standard treatment for Hunter syndrome)

Those parents must have felt the pain I do, when they first saw the improvements this drug was making to the lives of boys living with Hunter Syndrome. They were probably told that ERT wasn’t going to help their boys as they were too old or too far along the path of the syndrome  for ERT to be of any benefit to their boys. I can imagine thier heartbreak.

The medical trial (which is ongoing ) is proving, by all accounts, very successful. The drug that Ethan receives weekly doesn’t cross the blood brain barrier but now with this trial that drug is getting straight into the brain and the differences…well, I can even see them when I’m skimming through Facebook.

Isn’t that amazing?

I know it is.

I know all these boys deserve this new drug.

Of course I know the importance of all this in the grand scheme of things ; but here’s the thing my boy isn’t just another child with Hunter syndrome – he is Ethan… my Ethie…my heart literally takes punch after punch when I see such wonderful amazing leaps towards a cure…from the sidelines.


Does that make me a selfish person?- maybe – I don’t know.

I know all these parents deserve hope, encouragement and praise for all they are doing and the risks they are taking in order to hopefully find a cure for Hunter Syndrome. I also know they didn’t go into this trial looking for praise , they simply wanted to give thier son a fair chance at life.

Those parents are brave, strong and are full of hope.

Then there are the parents like me.

The ones who are left behind. Left with just managing the progression of one of life’s cruelest syndromes. Watching our children regress…lose every single skill until eventually there are no more skills to lose.

I know it’s not easy to be part of a clinic trial, I have imagined plenty of times how life would change yet how scary that would be too.
How many more issues would  arise- how one day I’d have to explain to Ethan that he has hunter syndrome, how he’d live a life full of different abilities from his brothers and peers except he’d be so aware of it; he’d understand Hunter Syndrome.

The possible medical complications also weigh so heavily on these parents…but their child is suitable and this is a chance at life…of course they are going to grab that chance with both hands.


It is hard being parents who were told no, or who never had the opportunity to take part , we are the ones who have to watch medical history happening from the sidelines.

So today I will skim past your videos, your posts and your written pieces …I am not strong enough.

But – know that I dream of a future where the word ‘terminal’ is wiped from a new diagnosis of Hunter Syndrome , just like you do.

If and when that happens, it will be down to you; you the parents for stepping into the unknown, giving your boys the best chance that has ever been offered to them.

I also know the fears it raises (as we did go through testing stages) , the many unanswered questions …my chance didn’t work out but yours has.

I may not read or follow your story but know that when I fundraise, when I pray and when I reflect it is for the same thing we all want – a possible cure- a chance at life for all our boys ; even those not born yet.

We are parents of boys with the same syndrome we are two parts of one sword – we are on different sides of that sword…that sword no one would ever want to be part of– for that reason alone, know that I am happy for you and your boys just sometimes it is hard to be on my side of that sword.


  1. I actually know these same feeling as there is a huge trail ongoing for children with my sons genetic condition who also have autism. We were refused based on the fact my son has too low an IQ which broke my heart. I still can’t read about how the children I know on the trial are doing either. It is a bitter pill to swallow and you are not selfish. It is self preservation my friend. We need that.

  2. I’m so sorry. Even if your child does end up in a clinical trial though if it’s double blind half will end up on a placebo, and unless they do what I think they call a crossover it’s possible your child wouldn’t get the drug. So maybe that would be worse? And there are also those trials that don’t work, those with horrific side effects you don’t know about till later. I hope the trials is amazing and this drug trial falls under orphan drug status so can be put on the fast track to get out to all that need it. There are laws in place to make sure orphan drugs get out there faster just for the reasons you so beautifully expressed!! <3

    1. Yes Lisa it sure does all come with no promises. Yes, I hope it falls under the Orphan Drug Act too but I am unsure as I don’t follow the trial — thank you so much for reading X

  3. I would be doing exactly the same, avoiding the posts and video feeds. There are some days we just can’t take it, we need to walk away from stuff that is just gonna upset us and then have a knock on effect to everyone else as our mood and mindset change. Huge hugs to you xxx

    1. Very wise Julie and I do try my best …but on the same hand I want to know how the boys are’s hard but like you say some days I just can’t..thank you so much for reading X

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