‘My son died at 24 – now I’m making his bucket list’

Alex Spencer’s son Declan – who had Duchenne muscular dystrophy – died last year at the age of 24, and she admits she still hasn’t gone a day without crying.

“I think there’s a misconception in society that the caregiver gets their life back (when a loved one dies),” she said.

Declan had prepared a bucket list but died before completing it.

Now Alex, who wants to raise awareness People with disabilities face difficulties In getting the right care, the challenge is taking on – including visiting Paris, getting Declan tattoo designs and getting his customized van Around a famous German race track,

In the year before Declan’s death, the family say he faced almost daily battles to get the NHS home care he was entitled to.

On one occasion, Alex says she stayed awake for 60 hours supporting Declan day and night due to the lack of caregivers.

“I want Day to be proud of me,” says Alex, as she displays her son’s wheelchair-adapted van as part of her bucket list at a supercar show in Birmingham in August.

He was due to enter the exhibition a year earlier, but Declan died the same weekend in August 2023, due to a life-limiting muscle wasting condition. People with the condition will usually only live past the age of 20 or 30, the NHS They say,

In his final years, he was unable to walk without assistance, required a ventilator to breathe, and was living with chronic heart and respiratory failure.

Now, the love and energy that Alex once directed towards caring for his needs has been transferred into fulfilling his greatest desires – and topping the list is “the most famous customized van in the UK”.

The BBC first met Declan, from Syston, Leicestershire, in 2018 and we followed his story for several years.

When we last met him in May 2023, he told us: “I’m a big petrolhead.

“I want to do a lot of things with my van.”

Since then, it has been decorated with bronze alloy, ceiling lights and a midnight purple colour-wrap.

As passersby see the van, Alex tells them about Declan’s life.

“It’s just overwhelming,” she says, her hands trembling.

She hopes to use the van to take other disabled people out and about, so they can fulfill their desires.

Declan was 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 the support repeatedly failed due to a lack of trained care workers within their allocated budget, which Alex believes put his health at risk.

In the final weeks before Declan’s death, with the increased care budget having been signed, Alex says the rota continued to be unfulfilled due to a lack of available nurses, leaving her with no time to care for her son Whom she wanted to cherish as a mother.

“I’m not medically trained, (but) I was doing the job that nurses are supposed to do,” she says.

Declan was given a few months to live in May 2023, but says he “only got to see the palliative care team the day before his death”.

Declan’s local care team – NHS Leicester, Leicestershire and Rutland Integrated Care Board (ICB) – told the BBC, “All organizations involved in Declan’s care were working with the family to provide the best possible care”.

A spokesperson said, “In highly complex cases, it may not always be possible to provide safe and effective care at home that meets all assessment requirements, but an option of residential care is always offered (to the family) “

More than a year after Declan’s death, Alex says she is “still trying to figure out who I am”.

She says, “I think there’s a misconception in society that the caregiver gets their life back (when a loved one dies). Not a day has gone by since I lost her in December that I didn’t cry. yes.”

Completing the bucket list has given her a purpose, she says.

Declan had many achievements while he was alive. She arranged for him to meet his favorite YouTuber Syndicate and got him tickets to The Weeknd and Harry Styles shows.

At the moment, there are plenty of things left on the bucket list, from meeting Declan’s favorite podcasters Chris and Rosie Ramsey to having his van reviewed by former Top Gear presenter Chris Harris.

Alex knows it will take time to complete.

Equally important to her is that, through the bucket list, she continues Declan’s legacy.

“It’s about being kind to others,” she says, “and not letting disability keep you from your goals.”