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.
Declan was diagnosed with Duchenne muscular dystrophy as a child.
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”.
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