Her body just isn’t in a place to do anything physical right now. The woman dealt with common cold-like symptoms which became chronic. Years later she realized her head was not attached to her spine. Devastated by the news, she still fought and today she owns a fashion brand that funds her treatments.
Amy Ironside Wood, a 38-year-old mom, thought she had a simple cold but as her symptoms worsened, she sought a diagnosis. What was discovered was a life-altering condition that left her in deep shock. It was discovered that her skull was not properly attached to her spine and that’s when she realized her condition was far more severe than what she initially thought. It all started in 2017 when Amy’s daughter Willow became unwell after returning home from nursery with glandular fever. Though Willow recovered in a week or so, Amy hasn’t felt any better since.
She first thought it was ‘just a little cold’ but when she started feeling extremely weak and faint, she considered giving it a second thought. It was only when the woman found out she ‘would feel like she was passing out repeatedly’ and had to ‘crawl to Willow’s bedroom if she woke up during the night’ that she realized she needed a deeper diagnosis. Over a series of blood tests, Amy’s condition kept going South. She felt a level of fatigue that’s quite abnormal for her a healthy person to even imagine. She mentioned how her ‘heart would race when she would roll over in bed as if she had just run up a flight of stairs.’ Even her legs felt too weak in the knees after standing for just a few minutes.
6 months later, Amy was diagnosed with Myalgic Encephalomyelitis (ME) and after substantial research, she realized that ME can be cured with neurosurgery. She prepared herself for the major surgery mentally and financially as she was eager to regain her life. But this was not the end of Amy’s suffering. In 2022, the woman was diagnosed with Craniocervical Instability (CCI). A specialist explained to her that CCI is a rare condition wherein the skull is not securely attached to the person’s spine and the treatments are super-expensive involving ‘brutal’ surgeries and a range of stem cell injections. This left Amy devastated but she did not give up.
Amy’s personal and social life is struggling each day as she cannot even perform the basic physical activities anymore. She can barely get out of bed most days, let alone take her daughter to the park. The hardest part, as Amy mentions, is the social isolation; she cannot even visit cafes or restaurants with her friends and family as the ambient noises worsen her symptoms. Although her life has been put on hold for nearly a decade, Amy is determined to recover now.
After the discovery of CCI, the woman started her clothing brand in 2023 to fund her treatments. Her brand is called Not Dead Apparel as it was launched in an effort to raise money for her surgeries. Last year, some influencer promoted her merch leading to a decent pick up in her sales. Her spinal cord operation is going to cost somewhere around £17,000 and £20,000 and Amy is trying to make this money from her business.
