Christmas appeal 2019

Please help ensure families like mine have the support we need at Christmas – and all year round – with a gift today.

My son is really looking forward to Christmas.

He’s such an energetic, fun-loving lad, so full of questions and curious about the world. His name is Somhairle (a Gaelic name, pronounced ‘Sorley’) and he was diagnosed with Duchenne muscular dystrophy back in August of 2017, when he was just four years old.

My husband Gerry and I first took Somhairle to the doctor because we were getting worried about his clumsiness when walking and how easily he got tired. We weren’t sure what the problem was, but we weren’t too worried. We thought the most he might need was a special pair of shoes to help him walk.

But then, after some referrals and blood tests, we were told our little boy had Duchenne muscular dystrophy, a muscle-wasting condition that has no cure. It would affect his walking and movement, his heart and breathing and would most likely cut his life short. This devastating news hit our family like a tidal wave.

As we were trying to process the diagnosis, we were also struggling with the idea of telling our friends and family what was happening. How do you begin to explain it? Thank goodness we found Muscular Dystrophy UK. Their website and publications were incredibly helpful as a source of information we knew we could trust.

That information helped us create what we called ‘The Script’. This was a speech we memorised, the only way we could get through the many conversations we had to have, telling friends and family about Somhairle’s diagnosis in the run-up to Christmas 2017. When the emotion got too much, for us or for them, we always had the facts to fall back on.

As that first Christmas after his diagnosis drew near, we knew we couldn’t face spending it as we usually did, surrounded by our extended family. We’d had a rough few months, with a lot of focus on other people’s feelings. We still felt quite drained and needed some time to ourselves. So, selfish as it sounds, we decided to rent a cabin in the Highlands, just the three of us: my husband, my son, and me.

That Christmas turned out to be a very special one to us – a quiet, reflective time together in beautiful surroundings. But it was also the first time I pushed my son in a wheelchair, which is something you don’t forget. I felt like we’d only just got rid of his pushchair, and now here we were again, rolling along on a very different set of wheels. The difference was that now I could feel people looking at us.  And there was an added stress: because Somhairle didn’t need his chair all the time, I worried that people thought we were faking. When we got to our destination and Somhairle stood up from his chair, did people think he didn’t really need it?

And all the while, one question swirled in our heads: How many more Christmases will we have together?

We spent the following year helping our families, friends and Somhairle’s school understand the realities of Duchenne. Again, Muscular Dystrophy UK was so invaluable to us at this time. When words failed us – as they often did – we had somewhere to turn for information.

The charity was also amazing in helping us navigate the state support that was available to us. MDUK let us know exactly what help we were entitled to, and when we dealt with the local authority we felt empowered with the facts. We were still scared, but we knew we weren’t alone.

By last Christmas, a full year later, we’d come a long way towards understanding and reckoning with Somhairle’s Duchenne diagnosis. We chose to spend Christmas surrounded by family again, and I have to say it was wonderful. Somhairle got to play with his cousins – he loved it! We all wore matching festive onesies on Christmas Eve, got the family around, and our home was at the heart of Christmas once again.

It’s been a brutally difficult journey for our family since Somhairle’s diagnosis, and it’s not over yet. It has made such a difference to have support and accurate information from MDUK. But they can’t do this vital work without your help.

This Christmas there are other families like ours who are struggling to cope with a new muscle-wasting diagnosis. Please take a moment this Christmas to give a gift to ensure they have the support they need now, and in the years to come.

By giving a donation this Christmas, you could ensure that MDUK continues to be there for every family facing a muscle-wasting diagnosis, with clear and accurate information and support, showing them they are not alone.

A gift from you could make sure families like mine are empowered with facts through MDUK’s helpline team as they seek to access the financial help and assistive equipment they need – and are entitled to.

Or perhaps your gift could help fund cutting-edge research into treatments I wish we had now. With your help, I’m truly hopeful that one day soon, these treatments will be widely available.

As my family looks ahead to another Christmas, it means the world to know we are not alone thanks to your kind support. And to know that research is underway that could one day lead to treatments or a cure for children like Somhairle.

On behalf of all the families facing their first Christmas with a muscle-wasting diagnosis, I hope you will give what you can to Muscular Dystrophy UK. I can’t begin to tell you what a difference you’ll be making.

Thank you and Merry Christmas,

Sarah McMenemy, mum to six-year-old Somhairle

Sarah, Somhairle and Gerry McMenemy
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