Kate shares her raw and emotional journey of losing her twin brother, David, who had Duchenne muscular dystrophy, at just 12 years old. She reflects on their special bond, as well as how different support was for siblings 30 years ago, and the difficulty of her grief journey.
“We came as a duo or not at all” – losing my twin brother with Duchenne
Content warning: This blog discusses death, grief and bereavement. Please read with care.
Losing my twin brother, quite literally my other half, has shaped my entire life. We were always together. We shared a room until the end, and that’s what I miss most: ordinary conversations in the dark, like normal siblings, even though nothing about our lives was ever really normal.
My brother was just a boy
David was very, very clever. He read encyclopaedias, car manuals, anything he could get his hands on. He loved planes, and we built model aeroplanes together and painted them. We went to Duxford to see the aircraft. He liked music, reading, cars and football. When we played, he was always in goal, whizzing across in his wheelchair to save the ball with his wheels. He was sarcastic and funny and had real spirit. We got into fights, like siblings do. He was just a boy, but with this added dimension to him.
Due to David’s complex needs, he definitely took centre stage…
David was diagnosed with Duchenne when we were about two. Mum and Dad could see my development next to his and realised something was different. Over time he had splints, then a walking stick, and by about six or seven he was in a wheelchair.
“I was always involved in every part of his life. From testing his wheelchairs, attending physiotherapy appointments, sleeping on a pull-out bed in his hospice room, to joining equine therapy… Where ever he went, so did I.”
By 10 years old, I’d learnt how to take splints off, help with hoisting and how to get him up from the floor. One time in the playground, he fell out of his wheelchair, and no one knew what to do. They came to get me from the other side of the field, and I ran across and just scooped him up back into his wheelchair.
The council wanted to send him to a Special Needs school, but mum and dad knew how clever he was and didn’t want him not to be challenged. They managed to fight it, and they installed ramps at our local mainstream school. I’m grateful we got to stay together, but nobody really understood – or considered – the life of siblings 30 years ago. Not because anyone meant to overlook me, but because David needed so much care.
We came as a duo or not at all. If there was a school trip that wasn’t accessible, I didn’t go either because it wouldn’t be fair on David. Which was fine, but it meant there was never anything just for Kate. So, when he died at 12 years old, I had no idea who I was without my brother.
I wasn’t denying his existence, it just felt too painful
David’s death was a huge shock as it was so unexpected. He got pneumonia and just couldn’t fight it. Because he was so young, he was still very independent, not at the stage I’ve seen in some older boys with Duchenne. It was awful he died so young, but in a way I’m glad he didn’t have to go through such painful deterioration.
After David died, I had some emotional support through the hospital because my mum and dad advocated for me. There was family therapy, and maybe two sessions by myself, but it was attached to all of us and wasn’t enough.
I didn’t process it. I buried everything and went off the rails in my teenage years. There was so much anger and self-loathing inside me, and I couldn’t understand why I was still here. Later that turned into pressure to live life for the both of us.
For years, I wouldn’t talk about him. It wasn’t that I was denying his existence, I just didn’t know how to talk about him positively without it breaking me. Up until about five years ago, if someone asked whether I had brothers or sisters, I would say no.
“I couldn’t bear sympathy from others or to dampen the conversation. It felt easier to try and ignore that part of my life, but repressing it hasn’t helped. Even now, seeing a boy in a wheelchair can make me cry.”
That’s why talking about David now feels so important. It happened 30 years ago, but David is still my twin. Saying his name and remembering the good as well as the hard feels like a way of bringing my brother back into my life.
Siblings need more support
I’d like to see more recognition of what siblings go through. You’re always on watch for how people treat your brother or sister, ready to help or sort something. The able-bodied child doesn’t have a normal childhood either.
I like the sound of sibling days at hospices; somewhere actually for them. They didn’t exist 30 years ago. But maybe the simplest thing is talking to siblings. Asking how they are and creating a safe space where they can be honest, even if what they feel is complicated. They can be angry or resentful, and it doesn’t mean they don’t love their brother or sister. It means they’re a child trying to carry something enormous.
Being David’s sister was a wonderful thing. But I wish there had been more room for Kate. Not instead of David, but alongside him.
