A Nottingham mother bedridden for eight years due to a rare medical condition, where her skull is not securely attached to her spine, has created a clothing brand to fund life-changing surgery.
Amy Ironside Wood, 38, first fell ill in 2017 after her daughter Willow, then a toddler, contracted glandular fever at nursery. Although Willow, now 10, recovered quickly, Amy’s debilitating symptoms have persisted ever since.
Initially diagnosed with myalgic encephalomyelitis (ME) by her GP six months after symptoms began, Amy felt the need to seek further answers. In 2022, a specialist in Barcelona identified her condition as craniocervical instability (CCI), a rare disorder where the skull lacks secure attachment to the cervical spine.
Amy’s symptoms range from extreme fatigue and weakness to the inability to stand for more than a few minutes. On some days, she is entirely bedridden, unable to engage in even simple activities like taking her daughter to the park.
To raise funds for treatment, Amy launched Not Dead Apparel in 2023. The clothing brand features items like T-shirts, jumpers, hats, and bags adorned with humorous slogans such as “Tired Girl’s Club,” “Live. Laugh. Lie Down,” and “Wish You Weren’t Here.” Amy explains that humor has been a crucial coping mechanism during her health struggles.
Amy’s illness began abruptly in 2017, following her exposure to glandular fever. She recalls intense fatigue, weakness, and frequent sensations of fainting. Despite an initial ME diagnosis, Amy was determined to find the root cause of her condition.
Her search for answers led her to a TED Talk by filmmaker Jennifer Brea, who shared her experience of managing ME through neurosurgery. Inspired, Amy sought further medical advice and, after extensive testing in Barcelona, was diagnosed with CCI in early 2022.
In addition to CCI, specialists suspect Amy has a tethered spinal cord—a condition that restricts the spinal cord’s movement. This diagnosis was confirmed in 2024 by a specialist in New York.
Amy is currently exploring two main treatments for CCI: stem cell therapy, which involves injecting cells into the ligaments at the skull base, and a complex surgery to fuse the skull and cervical spine using hardware. The surgeries are expensive, with costs ranging from £80,000 in Spain to over £200,000 in the U.S. Additionally, the tethered spinal cord surgery is estimated to cost £17,000 to £20,000.
To avoid solely relying on donations, Amy launched Not Dead Apparel. While her family and friends initially supported the venture, the brand gained traction in March 2024 when an influencer featured one of her hats on Instagram. Profits from the business, combined with donations from her GoFundMe page—which has raised over £8,000 so far—are helping Amy inch closer to her medical goals.
Reflecting on her journey, Amy said, “There are so many hard pills to swallow with this illness, but for me, the social isolation has been the toughest. I feel like I grieve for the person I used to be.”
Despite her condition, Amy handles the design, administration, and customer service aspects of her business, outsourcing embroidery due to physical limitations. Her humor-filled designs resonate with people facing various struggles, offering them a sense of solidarity.
Looking ahead, Amy hopes to undergo her first surgery, the spinal cord release, within the year. “It’s been almost eight years of illness, and I really don’t want to reach the 10-year mark,” she said.
With her determination and the support of her growing community, Amy aims to reclaim her health and her life, one step—and one stitch—at a time.
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