Alex Spencer’s son Declan, who had Duchenne muscular dystrophy, passed away at the age of 24 last year. Alex openly shares that she has not gone a day without shedding tears since his passing. She challenges the common misconception that caregivers regain their lives after losing a loved one.
Prior to his death, Declan had created a bucket list, which remained incomplete. With a desire to shed light on the challenges faced by disabled individuals in accessing proper care, Alex is on a mission to fulfill Declan’s wishes. This includes embarking on adventures like visiting Paris, getting a tattoo designed by Declan, and driving his modified van around a renowned German race track.
In the year leading up to Declan’s passing, the family fought tirelessly to secure the NHS home care he was entitled to. Alex recounts staying awake for 60 hours on one occasion due to a shortage of carers, providing round-the-clock support to Declan. Through her efforts, Alex aims to make Declan proud by showcasing his wheelchair-adapted van at a supercar show in Birmingham, an event they had planned to attend together the year prior.
Following Declan’s death, Alex redirected her care and devotion into realizing his dreams, with a primary goal of having the most recognized adapted van in the UK. She takes the van to car shows across the country, engaging spectators in Declan’s story and aspirations. Her ultimate hope is to use the van to facilitate outings for other disabled individuals, enabling them to fulfill their own wishes.
Despite being entitled to 24/7 care through the NHS Continuing Healthcare scheme, the family faced challenges due to a shortage of trained care workers within their allocated budget. This led to lapses in support, jeopardizing Declan’s well-being. As his health deteriorated, the family struggled to secure adequate nursing care, leaving Alex to take on tasks beyond her expertise in his final days.
In the midst of these difficulties, Alex remains determined to honor Declan’s memory and advocate for improved care for disabled individuals. Through her unwavering dedication and tireless efforts, she continues to champion for better support systems and opportunities for those in need.
Journeying to Paris alongside a knitted replica of Declan, the cherished family photo in tow, Alex reflects on the enduring impact of her son’s passing, more than a year since he left this world. In her quest to navigate life without Declan, she shares, “I am still in the process of discovering my true self.” Contrary to popular belief, she dismantles the misconception that a caregiver regains a sense of normalcy once their loved one departs. Alex reveals the raw truth of her ongoing grief, admitting, “There hasn’t been a single day since Dec’s departure that hasn’t been tinged with tears.”
Amidst the tumult of loss, Alex finds solace and purpose in pursuing Declan’s bucket list, a compilation of dreams yet to be fulfilled. Each checked off item serves as a beacon of hope in an otherwise somber reality. Even amidst Declan’s lifetime, there were remarkable achievements that Alex orchestrated, such as arranging a meeting with Syndicate, his beloved YouTuber, and securing tickets to The Weeknd and Harry Styles concerts, creating priceless memories that endure beyond his physical presence.
The narrative of Declan’s life is interwoven with the diagnosis of Duchenne muscular dystrophy during his childhood, a formidable adversary that shaped their journey together. Despite the bittersweet memories lingering in the wake of his absence, Alex remains resolute in her commitment to see through the remaining aspirations on Declan’s bucket list. From the eagerly anticipated encounter with podcasters Chris and Rosie Ramsey to having his van reviewed by the esteemed former Top Gear presenter Chris Harris, each item represents a poignant tribute to a life lived fully, albeit too short.
Aware of the time and dedication required to fulfill Declan’s dreams posthumously, Alex embraces the journey with unwavering determination, knowing that each accomplishment serves as a testament to his enduring legacy. “To embody kindness towards others,” she emphasizes, “and to defy the limitations imposed by disability in the pursuit of one’s aspirations.” Through the medium of the bucket list, Alex strives to perpetuate Declan’s spirit of compassion and resilience, a legacy that transcends the confines of mortality.
As she navigates the intricate tapestry of grief and remembrance, Alex finds solace in the unwavering support of the community and the shared memories that bind them together in their collective mourning. Each step taken towards fulfilling Declan’s dreams becomes a shared triumph, a testament to the power of unity and the resilience of the human spirit in the face of loss.
Echoing her sentiments of perseverance and hope, Alex invites others to join her on this poignant journey of remembrance and fulfillment. Through the lens of social media and digital platforms, she extends an invitation to follow their story on BBC Leicester’s Facebook page, website, and Instagram, fostering a sense of connection and solidarity in honoring Declan’s memory.
