When Sarah’s son died at just 18 years old, she felt like the system had failed Bradley, who had Duchenne muscular dystrophy. The family experienced first hand the lack of support and resources available for people with muscle wasting conditions during the transition period between child and adult services. Sarah chose to do something about this in her son’s memory and set up Bradley’s Promise Charity.
“I created Bradley’s Promise Charity after my son died in a way nobody should.”
When my beautiful boy Bradley passed away in April 2022, my world shattered. He was just 18 years old. Throughout his life, we faced battles that no family should have to face alone. Despite it all, Bradley made amazing memories and loved life, and it shouldn’t have been taken from him so young, or the way it happened.
One of the hardest things I’ll ever live with are the words he said to me just hours before he passed away in Marie Curie Hospice: “Mum, I don’t want to die.” How do you respond to your child when they say that? I didn’t know what to say apart from “No. You just sleep, sweetheart.” Then he was gone.
A fight for support that never came
From the beginning, we had to fight for information, services and basic care. Unless you’re lucky enough to find Muscular Dystrophy UK or a supportive network, you’re left on your own. We were failed by social services, left with an unworkable 15-hour care package that no one would take on. We were passed around, ignored and often made to feel invisible.
When Covid-19 hit, everything fell apart and neither of us could cope. Bradley had to go into a care facility just so that he could get 24-hour care. It wasn’t a choice I wanted to make — it was survival. But that meant I couldn’t see him properly. I remember driving to Coventry all those times, just to stand outside his window and talk to him through the glass.
The government has no idea how much pressure families like mine are under. I didn’t even realise how broken our relationship was until Bradley went into that care placement and we were able to be just mum and son. It shouldn’t take a crisis to get support.
“Families like mine are being pushed to the edge, and unless things change, more families will break under the pressure.”
Even his hospice care was cut off the moment he turned 18. Bradley had attended our local hospice since his diagnosis, but he went from being a child to an ‘adult’ overnight, and suddenly no one knew where he belonged. When he needed end of life care, he had to go to a Marie Curie hospice. Not only was this a place for cancer patients, even the nurses agreed he was too young to be there. But there was nowhere else for him to go.
A fun and inclusive community hub for those left out
Bradley’s Promise is my response to that heartbreak. But it’s also a response to a huge gap in support for young people aged 16 to 25. There are resources for children, and services for older adults, but this age group is often left behind. That’s why I’ve launched a community project that offers connection for young people with Duchenne and similar life limiting conditions across Shropshire and Warwickshire.
Our hub is a space where young people can come together, play Xbox, enjoy a game of pool (Bradley’s favourite) or just hang out. Friends without disabilities are welcome too.
“Why should young people with disabilities miss out on typical teenage experiences like socialising with mates? That sense of normality is powerful. And it’s needed.”
The charity has been a whole family effort. My younger son, who’s only 13, built our charity website from scratch. I gave him the information I wanted on there, and he asked if he could design it. It gave him his own special connection to Bradley.
Eventually I want hubs like this across the country, because families like ours exist everywhere. Right now, I’ve got a few young people attending and we play cards or just chat. Once more come, we’ll host quiz nights, race nights, special events… anything they want.
Right now, I’m in the process of getting the charity officially registered, so this community project is just the start! My end goal is to create an Information hub and social place for these young people and a hospice specifically for young people aged 16 to 25. There’s a complete lack of age-appropriate care for this group, and that has to change. Bradley was too old for children’s hospices and too young for adult care. He didn’t belong anywhere. But I want to fix that.
Bradley’s legacy
Bradley was no stranger to Muscular Dystrophy UK. When he was just four, we attended a meeting and someone spotted him playing. They commented on how photogenic he was and asked if they could use him for a charity campaign. That led to years of fundraising and campaigning. Bradley designed a Tesco gift card, recreated a famous awareness poster from 1975, and even met Sue Barker when we won a fundraising award.
We were always proactive. I was determined to help Bradley live life on his terms. Before he passed away, he told me, “Don’t let anybody else go through this, Mum.” That’s why this charity exists. That’s why it’s called Bradley’s Promise. And that’s why I’ll keep fighting for him and for every family like ours.
