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Alex Spencer is determined to fulfill her late son’s bucket list after he passed away at the age of 24 from Duchenne muscular dystrophy last year. Despite her grief, Alex wants to raise awareness of the difficulties disabled people face in getting the right care. They had been due to attend a supercar show in Birmingham the year before, but Declan died that weekend, having had the life-limiting muscle wastage condition.
Alex’s son Declan had drawn up a list of dreams that he didn’t get to live. Now, the love and energy his mum once directed towards caring for his needs has been transferred to completing his biggest wishes. “I want Dec to be proud of me,” says Alex. “It is very overwhelming,” she says. Now she takes his wheelchair-adapted van to car shows across the UK, which is part of his bucket list, and as passers-by view the van, Alex engages them about Declan’s life.
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. Declan had been entitled to 24/7 care through the NHS Continuing Healthcare scheme, but the family say a shortage of trained care workers within their allocated budget meant support repeatedly fell through.
Declan’s final years were tough, as he was unable to move unassisted, required a ventilator to breathe, and lived with chronic heart and respiratory failure. Declan had been given months to live in May 2023, but Alex says they “only got to see the palliative care team the day before he died.” Despite her difficult journey, completing the bucket list has provided Alex with a purpose and hopes to use the van to take other disabled people on days out to make their own wishes come true
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