‘My son died at 24
family photosAlex Spencer, whose son Declan, who had Duchenne muscular dystrophy, died last year aged 24, admits she still doesn’t go a day without crying.
“I think there’s a misconception in society that caregivers can get their lives back (when a loved one dies),” she said.
Declan created a bucket list but died before completing it.
Now Alex wants to raise awareness Difficulties faced by people with disabilities To get the right care, he’s taking on challenges – including visiting Paris, getting a tattoo designed by Declan and riding in his converted van Around the famous German racing circuit.
A year before Declan died, his family said they faced an almost daily battle to secure the NHS home care he was entitled to.
At one point, Alex said she stayed up for 60 hours straight, supporting Declan around the clock due to a lack of nursing staff.
“I want Dec to be proud of me,” said Alex, who showed off her son’s wheelchair-converted van as part of his wish list at the Supercars show in Birmingham in August.
They were due to take part in the exhibition the previous year, but Declan died that weekend in August 2023, suffering from a life-limiting muscle-wasting condition. The NHS says people with the disease usually only live into their 20s or 30s explain.
In his final years, he was unable to move without assistance, required a ventilator to breathe, and suffered from chronic heart and respiratory failure.
Now the love and energy that Alex once devoted to his needs has been diverted to fulfilling his greatest wishes – not the least of which is to own “Britain’s most famous converted van”.
The BBC first met Declan, from Syston, Leicestershire, in 2018 and we have followed his story for many years.
When we last saw him in May 2023, he told us: “I’m a big greaser.
“I want to do a lot of things to my van.”
Since then it has been decorated with bronze alloys, ceiling lights and midnight purple colours.
As passers-by view the van, Alex fills them in on Declan’s life.
“This is so overwhelming,” she said, her hands shaking.
She hopes to use the van to carry other disabled people around and fulfill their own wishes.
Declan is entitled to 24/7 care through the NHS Continuing Healthcare Scheme, which is designed to enable people with the most complex needs to live outside hospital.
But the family say a lack of trained carers within the allocated budget means support has repeatedly failed, which Alex believes puts his health at risk.
In the final weeks before Declan’s death, as care budgets increased, Alex said a shortage of available nurses meant the rotas continued to go unfilled, allowing her to care for her son in the time she wanted to cherish as a mother.
“I have no medical training, but I’m doing what a nurse is supposed to do,” she said.
Declan was expected to live for a few months in May 2023, but she said they “didn’t meet the palliative care team until the day before he died”.
Declan’s local care team – NHS Leicester, Leicestershire and Rutland Integrated Care Board (ICB) – told the BBC “All organizations involved in Declan’s care are working with the family to provide The best care possible”.
A spokesman said: “In highly complex cases, it may not always be possible to provide safe and effective care at home that meets all assessed needs, but alternatives to residential care are always available (to families).”
family photosMore than a year after Declan’s death, Alex says she’s “still trying to figure out who I am.”
“I think there’s a misconception in society that caregivers can get their life back (when a loved one dies). There hasn’t been a day since I lost December that I haven’t cried,” she said.
Completing the bucket list provides her with a purpose, she said.
Declan also achieved many things during his lifetime. She arranged for him to meet his favorite YouTubers, Syndicate, and got tickets to a show by The Weeknd and Harry Styles.
family photosHe currently has several things on his wish list, from meeting Declan’s favorite podcasters Chris and Rosie Ramsey to having his van reviewed by former Top Gear presenter Chris Harris .
Alex knew it would take time to complete.
Equally important to her, through Bucket List, she continues Declan’s legacy.
“It’s about being kind to others,” she said. “Don’t let a disability stop you from achieving your goals.”
