Mother Embarks on Fulfilling Son’s Unfinished Bucket List After His Death at 24

Alex Spencer’s son, Declan, who suffered from Duchenne muscular dystrophy, passed away last year at 24 years old. She acknowledges that she has not ceased crying for a single day since. “I think society has a misconception that a carer gets their life back [when a loved one dies],” she stated. Declan had compiled a bucket list, but he passed away prior to its completion. Now, Alex is undertaking this challenge, aiming to highlight the obstacles disabled individuals encounter in securing appropriate care. Her endeavors include a trip to Paris, receiving a tattoo designed by Declan, and driving his specially adapted van on a renowned German race track. During the year preceding Declan’s death, his family reports confronting nearly daily struggles to obtain the NHS home care he was eligible for. Alex recounted one instance where she remained awake for 60 hours, providing continuous support to Declan day and night because of a lack of carers. “I want Dec to be proud of me,” Alex expressed, while showcasing her son’s wheelchair-accessible van at a supercar event in Birmingham in August, fulfilling an item on his bucket list. They had planned to attend this exhibition the previous year, but Declan passed away that weekend, in August 2023, having lived with the life-limiting muscle wastage condition. The NHS indicates that individuals with this condition typically live only into their 20s or 30s. In his last years, he could not move without assistance, needed a ventilator for breathing, and experienced chronic heart and respiratory failure. The affection and effort Alex previously dedicated to attending to his requirements have now been redirected towards fulfilling his greatest desires, with the primary goal being to possess the “most well-known adapted van in the UK”. The BBC initially encountered Declan, who resided in Syston, Leicestershire, in 2018 and documented his journey for several years. During their final meeting in May 2023, he conveyed: “I’m kind of a big petrolhead.” “There’s so many things I want to do to my van.” Subsequently, the van has been customized with bronze alloys, ceiling lights, and a midnight purple color-wrap. As onlookers observe the vehicle, Alex discusses Declan’s life with them. “It is very overwhelming,” she remarked, her hands trembling. She intends to utilize the van to transport other disabled individuals on excursions, helping them realize their own aspirations. Declan was eligible for round-the-clock care via the NHS Continuing Healthcare scheme, a program established to allow individuals with the most intricate needs to reside outside of a hospital setting. However, the family asserts that a scarcity of qualified care workers within their designated budget led to consistent failures in support, which Alex contends jeopardized his health. In the last weeks before Declan’s death, even with an approved increased care budget, Alex stated that a lack of available nurses resulted in unfilled rotas, compelling her to care for her son during a period she wished to treasure as a mother. “I’m not medically trained, [but] I was doing stuff nurses should be doing,” she commented. Declan had been given a prognosis of months to live in May 2023, yet she noted that they “only got to see the palliative care team the day before he died”. Declan’s local care provider, the NHS Leicester, Leicestershire and Rutland Integrated Care Board (ICB), informed the BBC that “all the organisations involved in Declan’s care were working with the family to provide the best possible care.” A spokesperson added, “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].” Over a year after Declan’s demise, Alex conveyed that she is “still trying to find out who I am.” She reiterated, “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 stated that fulfilling the bucket list has given her a sense of purpose. Numerous accomplishments were also achieved during Declan’s lifetime. She organized for him to meet Syndicate, his preferred YouTuber, and secured tickets for concerts by The Weeknd and Harry Styles. Currently, several items on the bucket list remain, ranging from meeting Declan’s favorite podcasters, Chris and Rosie Ramsey, to having his van reviewed by former Top Gear presenter Chris Harris. Alex understands that their completion will require time. Equally significant to her is the continuation of Declan’s legacy through the bucket list. “That’s to be kind to others,” she affirmed. “And to not let disability keep you from what your goals are.” For updates, follow BBC Leicester on Facebook, X, or Instagram. Story submissions can be sent to eastmidsnews@bbc.co.uk or via WhatsApp at 0808 100 2210. Copyright 2024 BBC. All rights reserved. The BBC bears no responsibility for the content of external websites. Information regarding their external linking policy is available.