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“I’ve been a single mum for 40 years and have three children, two with Duchenne” – here’s what I wish I’d known.

Yvonne has raised three children, two with Duchenne muscular dystrophy. She cares for her youngest son, 42-year-old Shane, most of the time now. Despite challenges they’ve faced over the years, including the bereavement of Yvonne’s eldest son, Casey, the family has wonderful memories together. Yvonne shares how she has coped as a single mum, the good times her family has had, and the advice she would give to other parents who have children with a muscle wasting condition.

Being a single mum for most of my children’s life has been hard, of course, but my goal was always to make my kids as happy as possible. I taught them to give everything and anything a go; to live life to the full.

Your child can live a great life

Shane is 42 now and we’ve been told he’s one of the oldest men with Duchenne in the country. Last year we experienced a lot of issues with carers, so I’ve been doing most  of Shane’s care for a while now. I have someone take over two afternoons a week, and we’ve just started having some nighttime care again. It hasn’t always been like this though.

“Shane has been very independent over the years. He has his own flat and has had girlfriends in the past.”

He used to like building tank models when he still had the strength. We used to travel to Spain a lot too. And as a child he took part in disabled sports when he was at school and won many medals.  

Nowadays, his favourite thing is playing computer games with his nephew and creating music with synthesisers. We also have a caravan in Skegness which we go to in the summer. We’re in the process of changing his seating and controls of his wheelchair so that he can return to doing things like going to the pub to play poker.

Find support in others, but also yourself

My ex-husband was never able to process the boys’ diagnosis. He was involved in fundraising for a while as that was where he felt he could make a difference, but he couldn’t accept our situation, which impacted our marriage.

For most of my children’s life, I had nobody to support me. I had a few friends who helped where they could, and I would speak on the phone to my family, but mostly I had to work things out on my own. My biggest support ended up being my daughter, who I relied on too much and often got left out of things. This will always be my biggest regret, but I don’t know what I would have done without her.

“Joining a local Muscular Dystrophy UK group was a fantastic comfort for me when the boys were young. It made me feel less alone and we’d go on days out together sometimes. We also had a Family Care Officer connected to the charity which was brilliant.”

Our local hospice, Francis House, was a haven for our family. The boys used to go there for much needed respite. My eldest son, Casey, was able to stay there at the end of his life. The staff were so brilliant, and I can’t praise them enough; we were able to be with him every day while he was receiving the best care. For years after, they would invite me for a small memorial on the anniversary of his passing.

Another thing that kept me going was my work. I was always the type of person that wanted to know everything about the boys’ condition and ways we could slow down the progression, so I ended up working as the medical secretary for their consultant at the Royal Manchester Children’s Hospital. It helped me have a purpose outside of my family and also helped us financially so we could do fun things together. I was determined to create lots of memories with my kids that we could all cherish. We had some lovely family holidays when they were younger, even going to Disneyland!

Advice I wish I’d known when my children were young

My biggest piece of advice to parents of children with Duchenne, is please don’t think of it as a death sentence. My youngest son is living proof at 42 that there is hope. Focus on the positives and make each day count. That doesn’t mean ignoring reality; I’ve had dark times over the years have suffered with depression since Casey passed away, but I manage it with medication. Never be scared to ask for help, which is my biggest weakness but also my greatest strength, because I will never let myself down.

“Make lasting memories. Let them do whatever they can, and even if you’re not sure, let them try. Fill their lives and their siblings lives with love and happiness.”

If you’re a couple, support each other and lean on each other. Diagnoses like this can push couples apart because you’re hurting so much, but use that energy for good. Join a support group and get to know other families who understand. Don’t be scared of the word ‘hospice’; it’s not just a place people go at the end of their life, but a welcoming place to get support and feel part of something special. 

Most importantly, remember that there is always hope, and love plays a huge part in that.

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We know that talking to people with similar experiences is powerful. Our support groups are safe and welcoming places to talk to others affected by muscle wasting and weakening conditions, share experiences and meet people who understand what you’re going through.