Translated material
The mother decided to fulfill her son's dying wish list
Alex Spencer from the UK, whose son, Declan, died at 24 due to a genetic disease, decided to fulfill the wishes from the list that her son made shortly before his death. In this way, she wants to raise public awareness of the difficulties that people with disabilities face in getting the care they need. The BBC reports this.
As specified, Declan suffered from Duchenne muscular dystrophy, a genetic neuromuscular disease that mainly affects boys and is characterized by progressive muscle weakness. A year before his death, Declan lost the ability to walk and breathe on his own, and he also had chronic heart and respiratory failure.
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Declan made a list of things he wanted to do before he died. Among them, in particular, was to visit Paris, get a tattoo of his own design and compete in a minivan adapted to his needs at the popular Nürburgring race track in Germany. His mother did this for him - this is how she decided to honor her son’s memory and raise public awareness about the difficulties her son faced due to his illness.
“I think there is a misconception in society that a person [who cares for a loved one with a disability] takes back their life [when a loved one dies]. Since I lost Declan, not a single day has gone by that I haven’t cried,” Alex said.
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For the last year of his life, Declan was treated at home under the UK National Health System (NHS) program. Alex says they have struggled every day this year to be able to receive their NHS home treatment. Alex once spent 60 hours at Declan's side without sleep because they didn't have enough caregivers for their family, and "did things that nurses were supposed to do." Declan only received palliative care a few months before his death.
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