A mother battling a rare condition where her skull is not securely attached to her spine has launched a clothing brand to fundraise for life-changing surgery. Amy Ironside Wood, 38, from Nottingham, first became unwell in 2017 after her daughter Willow, who she shares with her husband, Nik, 42, came home with glandular fever from nursery. Now 10 years old, Willow recovered within a week but Amy’s symptoms “haven’t lifted since”.
A former fashion buyer, Amy said she felt “weak” and “faint” and had to crawl to and from her daughter’s bedroom if she woke at night – and six months later, after several blood tests, her GP initially diagnosed her with ME (myalgic encephalomyelitis). However Amy pushed for further answers and sought help from a specialist in Barcelona , who was able to diagnose her in 2022 with craniocervical instability (CCI) – a rare medical condition where the skull is not securely attached to the spine. Treatments for the condition vary from expensive, “brutal” surgeries overseas to costly stem cell injections, but Amy hopes a remedy is on the horizon as there are days she is bed-bound and she feels like her life has been “put on hold” for nearly a decade.
To raise funds, Amy launched her own clothing brand in 2023 named Not Dead Apparel, where items such as jumpers, T-shirts, caps and bags are embroidered with slogans highlighting her “very dry” sense of humour – such as ‘Tired Girl’s Club’, ‘Live. Laugh. Lie Down.
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