What does MPS mean?

When a chance meeting leads to questions about Pudding I often say he has a genetic disorder that causes his development delay. People can be genuinely interested and ask for more information, wanting to know the name of the condition. My heart sinks a little – they won’t have heard of it, just like I hadn’t a year ago – but say the word anyway. Mucopolysaccharidosis. They look a little taken aback and ask what that means. Usually I give the official answer: it’s a progressive condition; due to a mistake on his DNA he is missing a vital enzyme; waste products build up all over his body causing a range of problems. But that explanation leaves so many blanks. It fails to explain what MPS II (Hunter Syndrome) really means to us.

It means pinning him down for needles and blood pressures and medicines every week. A four-hour infusion every week, for the rest of his life.

It means feeling guilty. Guilt that I don’t do enough to stimulate him, guilt that I sometimes snap at him when it’s not his fault, guilt that I might have caused this whole thing by having him later in life.

It means living with the possibility that our child will die before us.

It means being grateful for every long-awaited milestone or achievement.

It means becoming a walking calendar; balancing preschool and social outings with weekly ERT, trips to Manchester, appointments with occupational therapy, speech and language, physio, ENT, portage…the list goes on.

It means mourning the expectations I once had for him of girlfriends, university, a good job and maybe children of his own.

It means never leaving anything on any surface unless we’re happy for it to be thrown or eaten.

It means pacing hospital corridors waiting for him to come round after another operation and dealing with his distress when he doesn’t understand why he is feeling so rotten.

It means wondering each month whether his body will continue to tolerate the new drug that is our current best hope.

It means feeling I have to be strong, but sometimes failing.

pudletIt means every time I see his gorgeous round face I am reminded of the condition that has sculpted this broad nose and large forehead.

It means being hit and kicked and pushed over by a boy whose size and strength is not matched by his understanding of how much he can hurt.

It means having certain dates etched on my mind forever – the date we heard about MPS for the first time, the date he got the final diagnosis….

It means our world will never be the same again.

It means he has charmed over 50 health or education professionals in the last year (the number has gone up since I last wrote about it in September)

It means tears. So many tears.

It means giving in to the TV as babysitter far more often than I would like as sometimes nothing else will calm him down.

It means learning to live in the moment and enjoy simple pleasures.

It means watching him like a hawk when we’re out anywhere in case he hurts another child or simply runs off.

It means grinning from ear to ear when I hear him chuckling at the TV, or a game of chase with his brother or when splashing in the bath. His laughter is so joyous and free.

It means holding faith in the science of the future that could save lives. And being grateful beyond measure that this is a possibility for us when for many others it will have come too late.

It means knowing the strength of love and support that we have from family and others.

It means accepting a new normal over and over again.

It means never knowing quite how to respond when his brother talks about what Pudding will be like when he’s grown-up.

But of course, I don’t usually give those answers to the person asking. Because if I bared my heart in the playground, or the cafe, or wherever we are, I would probably never stop talking about it or I’d start crying. And I’m sure they don’t really want a soggy Hunters Mum on their hands. And after all, when it comes down to it, MPS is everything and nothing. Pudding is still our little round lump of gorgeousness and nothing – certainly not this diagnosis – will ever change that.

***MPS Awareness Day – May 15th – Wear It Blue (or purple). Share on social media***

Comments

  1. Ger

    beautiful Sally , I couldn’t have worded it any better myself…it means so much sometimes and then other times when you’re angry or sad it means bitterness …
    love to ye all as always
    Ger

    1. HuntersMum

      Thank you! As ever, your approval (can’t think of a better word right now!) means a lot…

  2. So beautifully written, your amazing and so is your lovely Pudding! Sending you big hugs x

    1. HuntersMum

      Thanks for your support!

  3. I soooo get this. We’re a lot further down the line and are doing better than expected but I get every word. I lived it. We’re at a different stage 14 years on but I remember those days. If I’m honest I am that person who actually went into more detail and I’ve broken down in public more times than I care to mention!! Bless you and your Pudding. God bless us all x

    1. HuntersMum

      Thanks, Claire. Love to you and your boys too!

  4. Louis

    Sally, my brother and I were diagnosed with Hunter’s syndrome when we were 2 years and six months old (respectively). Now we are 22 and 20, and still going strong. When we were diagnosed the enzyme replacement therapy didn’t exist, causing our parents to be distraught, believing that their two sons would pass away in their teenage years. However, we’re still going strong, doing what we enjoy and making the most of the time we have been gifted. Pudding is receiving ERT at a much younger age than us two, so he has even more of a chance to do what he enjoys in life. This was a beautifully written article from a parent’s perspective.
    Here’s a link to an article that I wrote last year, showing the feelings from someone with the condition.
    http://blog.gosh.org/patientsandparents/living-with-hunters-syndrome/
    Remember, it’s not “suffering from”, when you have a condition like this. It’s “living with”!

    1. HuntersMum

      Thank you very much for sharing your story – I remember reading it a while back! It wasn’t too long after Pudding was diagnosed that we met another young man (21) with Hunter’s and I found that so helpful, knowing that it didn’t necessarily mean the worst. I know we’re very lucky that he’s been diagnosed at a time when ERT is available and remain hopeful that the clinical trial for the central nervous system will prove as successful… Modern medicine is so full of wonders.

  5. Such a beautiful, honest and loving post. I’ve never heard of Hunter’s Syndrome so I thank you for filling me in on what its like. I often times feel alone having two children with autism but I also can take comfort in having a large community of other parents to connect with. Sending light and love your way Mama! 🙂

  6. Always love to be educated more so thanks for sharing your story on the BritMums linky. I’m hoping you’ve managed to find some good local support, as I think many of the thoughts and issues you have are shared by other mums of children with other special needs too. Hugs x

  7. Beautifully written post. I had never heard of MPS or Hunters, thank you for raising awareness.
    I will re post on my social Media xxxxxx pudding is gorgeous xxxx

    1. HuntersMum

      Thank you so much – I have to agree with you on the gorgeousness!

  8. Sending so much love to you,I think the guilt is something that is so hard especially when there are no easy answers, either about why it happened to our children or about the treatment they need. I hope the latest treatments for pudding. Thank you for sharing this with us at #PosrsFromTheHeart

    1. HuntersMum

      Thank you!

  9. This brought tears to my eyes. Beautifully written and I’m in awe of your strength, though I hope you’ll find some support. We can only do so much alone. You boy is absolutely gorgeous. Thank you for sharing your story so honestly and openly #postsfromtheheart

    1. HuntersMum

      Thank you, Nadia. We’re getting more support these days and still hopeful for the future, though of course as with all parenting there are ups and downs!

  10. Beautifully written post, as a mother of two disabled children I can understand your feelings. I love how you have so many positives, hang on to those, they are what get you through it all. xx
    #Postsfromtheheart

    1. HuntersMum

      Thank you – it can be difficult to hang on to the positives sometimes, but I try!

  11. This is beautifully written. I had never heard of this before so thank you for sharing and raising awareness xx #postsfromtheheart

    1. HuntersMum

      Thank you!

  12. This is such a beautiful and bittersweet post. I’ve never heard of MPS before. #PostsFromTheHeart

  13. Thank you for sharing this beautifully written post. I had never heard about this before so thanks for raising awareness x
    #PostFromTheHeart

    1. HuntersMum

      Thank you!

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