By Jack Waddington
We are pleased to feature a guest very special guest blog for World Duchenne Awareness Day 2025. This blog has been written by Jack Waddington. Jack’s younger brother Sam lived with Duchenne after he passed away, Jack has written a memoir about growing up with him. In his own words, “it’s about the love, challenges, and grief that shaped our family. It’s an area rarely explored in literature, and I want to help raise awareness while showing other siblings they’re not alone.”
We are honoured to share an excerpt from his memoir which will be published in December.
TUESDAY 12 MARCH
“Happy Birthday, my little bro.
I’ve probably said that at least fifty times today. First thing that came out of my mouth when I woke up. I opened my sleep-deprived eyes, remembered you weren’t here anymore, felt a sting in my chest, and whispered, ‘Happy Birthday.’ Then I cried.
We went to Hilly Williers Garden Centre for an afternoon tea to celebrate your big twenty-seventh. Granny, Auntie Carolyn, and Uncle Roger joined the three Waddington’s – a solid team line up, I’m sure you’d agree. Granny, now in her mid-nineties, rarely gets out these days, so it was a real treat to have her with us.
Arranging the do was a challenge; it felt odd booking a table over the phone without asking for a wheelchair space. I didn’t even mention you to the girl on the phone. But we had to do something. Staying at home and dwelling on your absence all day long wasn’t a possibility. You always enjoyed a meal out, so we did it in the birthday boy’s honour.
You didn’t quite make it to the party Megan had planned, which was scheduled for this afternoon, bless her. Everyone was looking forward to it, especially you. It would’ve been an absolute blast. The people, the food, the twenty-two-hour party playlist you got carried away with making – yes, you didn’t want to miss out on any of your favourite songs, so you crammed them all in. Party Playlist features three-hundred-and-thirty-two songs all together, from ‘Love Shack’ by The B-52’s to ‘Love Train’ by The O’Jays. So much love, so much cheese. Just what you liked.
While an afternoon tea at Hilly Williers isn’t quite the same as a big birthday bash with all your friends and family, it felt necessary.
I took your framed graduation photo and placed it at one end of the table, so we could all see it, like you were there with us, serviette tucked into the neck of your jumper, knife and fork at the ready, licking your lips as I plated up a carbolicious feast for you. It reminded me of Agathe’s photo-at-the-wedding dream. I kept smiling at you as I tucked into sandwiches and scones. Super proud of my little bro for earning his Journalism degree, passing with flying colours, despite the teachers who once doubted you’d ever catch up with your peers.
Back in primary school, before any of us knew about Duchenne, you could still walk – a bit wobbly at times, always picking yourself up after a fall. Could this unsteady kid really compete, really succeed, amongst these steady walkers? Did he need to go to a special school? Nope nope nope, you stomped. As the years went on and your legs weakened – finally giving up when you were about twelve, the wheelchair becoming permanent – you just kept going. You pushed your wheels through a world not built for wheelchair boys, through mainstream education, through every doubt anyone ever had about what you could achieve. And you smashed it. My stubborn monkey.
We even raised a toast to you at one point, agreeing how handsome you looked in your graduation attire. The sun shone on your tanned face, your beard looked on point, and you suited those bizarre black hats graduates have to wear. You always looked good in a hat, whether it be a cap or a beanie, unlike me, who looks like someone you’d want to avoid. Maybe it’s my head shape, I don’t know.
I took a trip to the accessible toilet at Hilly Williers. Bit cheeky, I know, but I had my reasons. And there were no other wheelchair folk – or bum-bounds, as you liked to call them – present. I imagined we were there together, caree-brother and carer-brother. I held the door open for your ghostly self to slip in. Remember how we used this loo a couple of years ago when we went to Hilly Williers for Mother’s Day? It hasn’t changed: still nice and roomy, no dodgy smells anywhere, and as clean as a whistle. We loved rating accessible toilets – size, manoeuvrability, aesthetics, hygiene, etc.”
We are so grateful to Jack for sharing this insight into the world of Duchenne siblings. Follow Jack on Instagram to read more of his story and find out when his memoir is published – we can’t wait to read more.
Have you got a story to share? We know that the most powerful stories come from within our community, and we’d love to hear from you. Get in touch with lizzie.cox@actionduchenne.org to find out more.
