The poignant story of Alex Spencer and her late son Declan serves as a powerful testament to love, loss, and the pursuit of dreams. Declan, who had Duchenne muscular dystrophy, tragically passed away at the young age of 24. His untimely death has left Alex and her family grappling with a profound sense of grief that remains unabated. In her words, “There has not been a day since I’ve lost Dec that I’ve not cried.” This statement underscores the pervasive nature of her sorrow, which continues to shape her life even over a year after his passing.
Declan had crafted a bucket list during his lifetime, a collection of aspirations that he dreamed of fulfilling. Yet, he left this world before completing it. In the wake of his death, Alex has taken it upon herself to not only cherish his memory but also to realize his dreams. Among the undertakings in this endeavor are visiting the iconic city of Paris, getting a tattoo designed by Declan, and taking his specially adapted van around a famous racetrack in Germany. Each of these activities not only honors Declan’s memory but also acts as a bridge for Alex to channel her love and energy into something productive and meaningful.
Throughout the year leading up to Declan’s death, the Spencer family faced relentless struggles to secure the necessary NHS home care that Declan was entitled to. Alex recalls a particularly harrowing experience where she remained awake for an exhausting 60 hours to support Declan, who depended heavily on care that was often unavailable due to a critical shortage of trained caregivers. It is a stark illustration of the challenges faced by families within the healthcare system, magnifying the struggles of those caring for individuals with severe disabilities.
Recognition of Declan’s spirit is embodied in Alex’s endeavors, including her participation in car shows where she showcases Declan’s adapted van. In August, she proudly exhibited his van at a supercar show in Birmingham, an event that Declan had hoped to attend himself. Sadly, he passed away the very weekend they were slated to visit the exhibition the year prior. Alex wishes to keep her son’s legacy alive by using their adapted van not only to honor him but also to assist other disabled individuals in experiencing their dreams and fulfilling their wishes.
The Spencer family gained visibility through media attention, including a memorable feature by the BBC that began in 2018. They documented Declan’s journey, illustrating his passion for cars and showcasing the adaptations made to his vehicle to enhance mobility. This connection resonates within the community as Alex opens dialogues with strangers about Declan’s life while displaying his boldly adorned van—painted a vibrant midnight purple and decorated with unique features like bronze alloys and ceiling lights.
While Alex acknowledges ongoing challenges ahead, such as completing remaining items on Declan’s bucket list—like meeting his favorite podcasters Chris and Rosie Ramsey—she finds solace and hope. Through this commitment to her son’s dreams, she embodies legacy and purpose, striving to uplift others and spread understanding regarding disabilities. As she puts it, “to be kind to others” and “not let disability keep you from what your goals are” serve as outlooks that she cherishes deeply. By navigating her grief in constructive ways, Alex Spencer exemplifies resilience and the enduring power of love.
