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

“I think society has a misconception that a carer gets their life back [when a loved one dies],” she said.

Declan had drawn up a bucket list but died before he could finish it.

Now Alex, who wants to raise awareness of the difficulties disabled people face in getting the right care, is taking up the challenge – including visiting Paris, getting a tattoo Declan designed and taking his adapted van around a famous German race track.

In the year before Declan died, the family say they faced almost daily battles to receive 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 a shortage of carers.

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

They had been due to attend the exhibition the year before, but Declan died that weekend, in August 2023, having had the life-limiting muscle wastage condition. People with the condition will usually only live into their 20s or 30s, the NHS says.

In his final years, he was unable to move unassisted, required a ventilator to breathe, and lived with chronic heart and respiratory failure.

Now, the love and energy Alex once directed towards caring for his needs has been transferred to completing his biggest wishes – and top of the list is to have the “most well-known adapted van in the UK”.

The BBC first met Declan, from Syston in Leicestershire, in 2018 and we followed his story over a number of years.

When we met him for the final time in May 2023, he told us: “I’m kind of a big petrolhead.

“There’s so many things I want to do to my van.”

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

As passers-by view the van, Alex engages them about Declan’s life.

“It is very overwhelming,” she says, her hands shaking.

She hopes to use the van to take other disabled people on days out, to make their own wishes come true.

Declan had been 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 of hospital.

But the family say a shortage of trained care workers within their allocated budget meant support repeatedly fell through, which Alex believes placed his health at risk.

In the final weeks before Declan died, with an increased care budget signed off, Alex says a shortage of available nurses meant rotas continued to go unfilled, leaving her to care for her son at a time she wanted to cherish as a mother.

“I’m not medically trained, [but] I was doing stuff nurses should be doing,” she says.

Declan had been given months to live in May 2023, but she says they “only got to see the palliative care team the day before he died”.

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

“In highly complex cases, it may not always be possible to provide safe and effective care at home which meets all assessed needs, but an alternative of residential care was always on offer [to the family],” a spokesperson said.

More than a year on from Declan’s passing, Alex says she is “still trying to find out who I am”.

“I think society has a misconception that a carer gets their life back [when a loved one dies]. There’s not been a day since I’ve lost Dec that I’ve not cried,” she says.

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

There were many achievements too while Declan was alive. She arranged for him to meet Syndicate, his favourite YouTuber, and got tickets to The Weeknd and Harry Styles gigs.

For now, there are several items on the bucket list remaining, from meeting Declan’s favourite 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.

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

“That’s to be kind to others,” she says. “And to not let disability keep you from what your goals are.”