When one of your children is diagnosed with an incurable muscle-wasting condition, it can have a devastating effect on your whole family.
Three years ago, my husband Sam and I found out that our son, Louis, had Becker muscular dystrophy. Ever since then, we have been overwhelmed with worry about Louis – about what he is going through and what lies ahead for him as his condition progresses. It’s been impossible to shake this soul-destroying feeling of guilt as I mourn the loss of the carefree childhood I wanted for all three of my children: Louis, his big brother William and little sister Lottie.
Our lives now are anything but carefree.
Louis is seven and it breaks my heart to see his condition really beginning to worsen. He gets so tired, he struggles to walk or handle stairs, he suffers terrible pain, and because Becker can have behavioural effects as well as physical ones, he can often be quite hard to manage and prone to tantrums.
The stress of it all – on Louis, on all of us – is really starting to take its toll. We try to go on ‘fun’ family outings, but between the wheelchair and parking hassles and Louis’ exhaustion, these trips require massive planning and are often just abandoned. Then, as bedtime draws near and Louis gets more volatile and uncooperative, Sam or I might lose our temper with him, or snap at each other, or at William or Lottie.
I hate that feeling of not being the kind of parent I wanted to be.
We live with so much fear for the future. How will we cope when Louis’ condition gets even worse? Becker affects everyone differently, so how can we prepare Louis – and Lottie and William – for what’s coming, when we don’t even know ourselves? How will we make our house accessible for him? What will we do about school?
This horrible anxiety is a constant presence in our lives now.
This Christmas what I’m really hoping is that you’ll be able to give a donation to Muscular Dystrophy UK so that nobody – and I mean nobody – is left to face this hard stuff alone.
What’s great about Muscular Dystrophy UK is that they are here for families like ours. This reassurance, this constant support, the information you can trust, advice you can rely on, is what your donation could help support this Christmas.
With a gift today, you could support the Muscular Dystrophy UK helpline. It’s wonderful to know that, when it all gets too much, I can pick up a phone, make a free call and talk to someone who really understands not just Louis’ condition but the impact it has on me and the entire family. Someone who is here for me.
Your kindness this Christmas could help more people access reliable information about muscle-wasting conditions, in publications and on Muscular Dystrophy UK’s website. This was a godsend for me and Sam when our Louis was first diagnosed – the doctor made us promise we wouldn’t Google anything, but that instead we’d get all our information from Muscular Dystrophy UK’s website. I still depend on it when the late-night worry kicks in. The site gives me what I need: actual facts.
A donation from you could help fund the ongoing Mental Health Matters programme from Muscular Dystrophy UK. Emotional support is so important when life feels overwhelming, both for the people diagnosed with muscle-wasting conditions, and for their loved ones. Your generosity this Christmas could help ensure training and improvements are put in place so individuals and families have access to the psychological support they need.
As we get ready for Christmas it breaks my heart to know that, in the coming year, more families like mine will have their lives turned upside down by a muscle-wasting condition diagnosis. Your kind support of Muscular Dystrophy UK could have a life-changing impact on those families – letting them know they are not alone, making sure they have the support they need – while also funding the research into treatments and cures that gives us all hope.
Your gift today could make sure families have the support they need, and do not have to face life with muscle-wasting conditions alone. It makes the world of difference. Believe me, I know.