MPS Parents

Today is MPS awareness day – the fourth I’ve marked since Pudding was diagnosed with Hunter Syndrome in July 2015. Whilst I have come to more acceptance of the condition, I can never ‘celebrate’ it.

But what I can celebrate are the other wonderful parents that I have met because of MPS:

The parents who spend weeks in isolation with their child through a bone marrow transplant.

The parents who travel across the country to sit for hours by hospital beds.

The parents who want to be there for procedures but can’t leave work.

The parents who have to stay strong so they don’t crumble in front of their kids.

The parents who can no longer physically manage caring duties 24/7 and have to welcome strangers into their house.

The parents who have no option but to soldier on with no help whatsoever.

The parents who encourage their kids to achieve whatever they can.

The parents who have to make decision after difficult decision.

The parents who learn to take on the role of nurse as well, accessing portacaths to administer treatment.

The parents who hold down a screaming child for yet another needle.

The parents who fundraise and push for new treatments.

The parents who are reeling in shock at one child’s diagnosis and are then told that their baby may have it too.

The parents who step into the unknown on clinical trials knowing that it might not even help their child, but may pave the way for the future.

The parents who have had to give up hope of seeing a treatment in their child’s lifetime.

The parents who dreamed of planning university and weddings and instead plan their child’s funeral.

The parents who are watching their child slip away bit by bit.

The parents who have already lost their child.

The parents who wish they had never heard those three little syllables, M. P. S.

The parents who are convinced that they are broken, that they cannot fight any more. And those same parents who carry on regardless, day after day, because that’s what parents do.

The parents who will love their child, for ever and for always.

You are all amazing. You are all stars. I wish I could send you all chocolate and flowers but virtual ones will have to do…

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Aware?

May 15th – MPS Awareness Day

I did intend to plan something this year. Something to raise money and get noticed. Make some noise and increase people’s awareness of mucopolysaccharidosis. It’s not really in my nature to draw attention to myself, even so I felt it was something that I should do.

But I haven’t planned anything at all.

To be honest, the last couple of months I’ve wanted to stick my head in the sand and pretend that MPS just doesn’t exist. But of course, my son doesn’t have that luxury. The effects that MPS has had on his brain stop him from knowing what it is doing to him. But I am very aware.

I am aware that his breathing is louder than it was, and he needs to rest more often again.

I am aware that many of his hard-won skills, such as pointing to head, toes or eyes, have faded away.

I am aware that he hasn’t grown in the last six months and is now on the 9th centile for his age (up until he was four he was on or above the 75th centile).

I am aware that he has lost most of the words that he was using.

I am aware that the treatments that should be stopping all this from happening are prevented from doing so by his own amazing immune system.

And most of all I’m aware of what all that MEANS. It means that unless something else can be done we are watching our vital, happy little boy die very slowly in front of our eyes.

Since we moved to our new house six months ago, the practicalities of our situation have been a lot easier to deal with, but emotionally the reality of MPS does hit me hard at times. So although I haven’t planned any awareness events, what I can do – what I have always done – is write.

I write about our experience so that others can learn about MPS; so newly diagnosed families can feel a little less alone. I write to save my sanity and hope that I spread awareness that way.

All the current research points to the fact that the earlier MPS is diagnosed the better; the few existing treatments (and new ones coming through) are much more effective early on while the body is still developing and before too much damage is done. So, please, for Pudding’s sake this MPS Awareness Day wear blue, share a post or two, donate if you can, and spread the word.

I’ll be wearing my blue wig and MPS T-shirt all day, and spreading awareness where I can. Who’ll be joining me?

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