‘I would have liked to have a ‘me’, back in the day, who’s been through it all, to just be on the end of the phone, or to give some advice’
Michelle Beckett and her son Ryan, who she lost more than three years ago to Duchenne Muscular Dystrophy.(Image: Beckett family photo)
A mother whose son died after battling an incurable disease has set up a support group to help other families enduring the same pain. When Ryan Beckett was diagnosed with Duchenne Muscular Dystrophy when he was eight years old, the whole family’s life was turned upside down.
At present, there is no treatment or cure for the muscle- wasting illness, which almost exclusively affects boys and is which is caused by a deficiency of a protein called dystrophin. Boys are often in a wheelchair before they reach their teen years, and sadly, it is unusual for sufferers to survive beyond their early thirties.
The Beckett family were in a position to give Ryan the best life experiences possible following the devastating diagnosis, spending his time with mum and dad, Michelle, 57, and Andy, 56, who is MD of a structural steel company, and sister Kamara, 29, travelling all over the world.
He got to meet some of his sporting and celebrity heroes including Oasis, Alan Shearer and even Mike Tyson. And Michelle gave up her job as a teaching assistant to devote all her time and energy to caring for her son.
Ryan sadly passed away when he was 29, just three days before Christmas in 2022. To channel her grief and to fill the void in her life, Michelle has launched a support group for other families and boys with Duchenne Muscular Dystrophy (DMD) – called the Brighter Days Club, in a nod to the lyric from Ryan’s favourite Oasis song Some Might Say.
Now, having held the first meeting at Sunshine House in Hull over Easter, she is calling on families from the region and beyond to get in touch and join the club.
She said: “I just want to help the boys. I know what it feels like to get the Duchenne diagnosis and I’d have wanted a ‘me’ to turn to.”
Michelle, 57, of Brandesburton, described how the Becketts’ world was turned upside down when Ryan was eight, after he’d had an initial diagnosis of Dyspraxia – a condition affecting youngsters’ coordination often making them appear awkward or clumsy.
Ryan had started at a group for children with Dyspraxia, where the physio saw the signs straight away that he actually had DMD. A blood test confirmed the physio’s suspicions, at a meeting with a specialist doctor soon after.
Michelle recalled: “We were devastated. They just said he won’t reach his 21st birthday, and he’ll be in a wheelchair by the time he’s 10 years old. So our world literally crashed around us.
“They said there’s no cure and there was nothing we could do. Just go away and give him a good life. That was it. No support, no nothing.
“That diagnosis is very much like your child has died at that point, because we knew he was going die. And I couldn’t do anything to save him, and nobody was going to help us.
“So basically, me and my husband decided, right, let’s do the best we can, while we can, and let’s get travelling – anything he wants to do, we’ll do it.”
Over the years they travelled the world, taking a long road trip to Australia, visiting places including the Great Barrier Reef and Whitsunday Islands, and to California, driving to Las Vegas, San Francisco, the Grand Canyon, Disneyland California, and Los Angeles. Other places included Lapland, Disney World in Florida – twice – New York, Spain, France, Turkey, Greece and Germany. Closer to home the four of them also spent 11 holidays in their ‘happy place’, Portreath in Cornwall.
As well as meeting Mike Tyson, Alan Shearer and Oasis brothers Liam and Noel Gallagher, Ryan was also Hull City ’s mascot on three occasions, and the family travelled all over Europe watching the Tigers play, including making a 27 hour trip road trip to Slovakia.
Michelle said: “We travelled the world, we took him everywhere. And we’re big Hull City fans as well, so he was mascot a few times.
“He loved Newcastle United as a little boy, so we took him there and to meet Shearer. It’s very rare Oasis do meet and greets, but we managed to blag one with the Gallagher brothers. We’ve done so many amazing things in his life.”
Ryan died in hospital on December 22 in 2022, just a few months away from his 30th birthday and after they returned home they found he had bought and wrapped Christmas presents for the whole family.
“We said, ‘not everybody gets a leaving present. We’ve got leaving presents from him’. And on the Christmas Day, we just sat in Ryan’s room and we opened the presents from him, and we opened each other’s presents. How we got through that day, I don’t know.
“We don’t do Christmas anymore. It probably took me about six months to open the presents I’d bought him, and I’ve still got them in a box. I broke my heart opening them, and I can’t bring myself to do anything with them now.”
At the start of this year Michelle decided to launch the Brighter Days support group, as a way to support families of boys with DMD and to organise activities and events they could enjoy. Jackie Green, the play therapist at Sunshine House teamed up with Michelle, offering support and help for the boys, while Michelle set about organising exciting activities.
At the first session at Easter five families came along to enjoy races, arts and crafts and music. Encouraged by the families’ feedback, the next event was planned, and takes place on Friday, May 29, from 1.30pm at Sunshine House. But Michelle wants more families to reach out and join the group.
She said: “I want to support the young boys. I want to give them something. We did our first session, and we had five families along to start with. We had such a lovely day and we had some lovely feedback. But I want more boys to come.
“I just want to help – that’s the sort of person I am, really.
“You have to battle for everything. Nothing you get is easy. And I battled for Ryan all his life – I battled for equipment and I battled to get the house adapted. And I would have liked to have me, back in the day. I would have loved to have a ‘me’ who’s been through it all, to just be on the end of the phone, or to give some advice, or say it’s OK.
“Ryan was my life 24/7 and I’ve lost that, and that takes a lot of getting used to. He was my priority. I put him before myself all the time. And so, now I’ve got this great big hole.
“Every morning, Ryan would shout to Alexa, ‘ring Mum’, and Ryan’s face would pop up on the phone every morning, and that was my wake up call every day. I had the screenshot turned into a picture. I’m missing that every day. I don’t want people to feel sorry for me. I just want to help these boys and these families.”
To find out more about Brighter Days email Michellebec77@outlook.com
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