Amy Ironside Wood’s life took a dramatic turn in 2017 when her daughter, Willow, contracted glandular fever. While Willow recovered quickly, Amy fell ill and has been battling debilitating symptoms ever since. Initially experiencing weakness, faintness, and extreme fatigue, Amy struggled to perform even simple tasks, like attending to her daughter at night. Her heart would race with minimal exertion, and her legs felt weak and unsteady. After enduring these symptoms for six months, Amy’s GP diagnosed her with myalgic encephalomyelitis (ME), a condition often triggered by glandular fever. However, Amy felt the diagnosis didn’t fully explain the severity and complexity of her symptoms, prompting her to embark on an extensive research journey.
Driven by a desperate desire to understand her condition and find a cure, Amy explored various diets, supplements, and medications. A pivotal moment came when she encountered a TED Talk by Jennifer Brea, a filmmaker who claimed to have achieved remission from ME through neurosurgery. Inspired by Brea’s story, Amy sought help from a specialist in Barcelona, who, in 2022, diagnosed her with craniocervical instability (CCI). This rare condition occurs when the skull is not securely attached to the spine. Further investigation by a specialist in New York in 2024 confirmed an additional diagnosis: tethered spinal cord, a condition where the spinal cord is attached to the surrounding tissue, restricting its movement.
These conditions cause significant fluctuations in Amy’s energy levels, leaving her bedridden on some days and allowing for limited activity on others. Simple activities like taking her daughter to the park or visiting restaurants are impossible due to her intolerance of noise and difficulty standing for extended periods. The impact on her life is profound, limiting her ability to be the active and present mother she longs to be. Amy now faces the daunting prospect of undergoing two complex and expensive surgical procedures. The first involves injecting stem cells from her bone marrow into the ligaments at the back of her skull, while the second, a significantly more invasive neurosurgery, involves fusing her skull and cervical spine. The cost of these procedures is substantial, ranging from £80,000 in Spain to over £200,000 in the United States for the skull-spine fusion, plus an additional £17,000-£20,000 for the tethered spinal cord release.
Determined to raise the necessary funds, Amy launched her clothing brand, Not Dead Apparel, in 2023. The brand reflects Amy’s resilience and dark humor, featuring slogans like “What fresh hell is this?”, “Tired Girl’s Club”, and “Live, Laugh, Lie Down” on jumpers, T-shirts, caps, and bags. Managing the design, administrative, and customer service aspects of the business herself, Amy outsources the embroidery due to her physical limitations. Initially, her customers were primarily family and friends, but her brand gained significant traction in March 2024 when an influencer shared one of her hats on Instagram. The increased visibility led to a surge in sales, offering a much-needed boost to her fundraising efforts.
Amy channels all profits from Not Dead Apparel and donations received through her GoFundMe page directly towards her medical expenses. With over £8,000 raised so far, she remains hopeful that she can undergo the tethered spinal cord release surgery later this year. Beyond the physical challenges, Amy struggles with the social isolation imposed by her condition. She yearns for the days when she was the “life and soul of the party” and grieves the loss of her former self. Facing the prospect of a decade of illness, Amy is determined to reclaim her life and regain the energy and vibrancy she once possessed.
Amy’s story highlights the profound impact of chronic illness, not only on the individual but also on their family and social life. Her relentless pursuit of answers, coupled with her entrepreneurial spirit and dark humor, underscores her resilience and determination to overcome the immense challenges she faces. The success of Not Dead Apparel demonstrates the power of social media and the kindness of strangers in supporting individuals navigating difficult circumstances. As Amy continues her fundraising journey and prepares for surgery, she remains hopeful for a future where she can once again be the active and engaged mother and individual she longs to be.
