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.’ and ‘Wish you weren’t here’.
“There are so many hard pills to swallow with this illness, but I think for me its the social isolation,” Amy said. “I used to be the life and soul of the party and inside I still have that energy and zest for life, but my body can’t express it without dreadful consequences. I’ve been unwell for almost eight years now so people barely remember the true me – I feel like I grieve for her most days.”
Amy feels her designs ‘resonate with people who go through all kinds of struggles’
Amy first became unwell in 2017 when her daughter, Willow, caught glandular fever from nursery – the infection of which is a known trigger for ME. “For me, the symptoms came on overnight and haven’t lifted since,” Amy said.
“I felt a level of fatigue that I could never have imagined as a healthy person – my heart would race when I would roll over in bed as if I’d just run up a flight of stairs. My legs were so weak that I felt my knees would buckle after standing for just a few minutes.”
Six months later and after several blood tests, Amy said her GP diagnosed her with myalgic encephalomyelitis (ME). “I spent every waking minute researching my condition – if I could work out what was actually happening in my body then maybe I could find a way to treat it,” Amy said.
Years went by with Amy saying she tried “every diet, supplement and medication” she could, when she eventually stumbled across a TEDTalk by American filmmaker Jennifer Brea who claimed she had put her ME into remission through neurosurgery. “I cannot explain the excitement I felt when I thought that there was a cure – even if it meant going through major surgery, I would have done anything at that point to get my life back,” Amy said.
She researched further and travelled to Barcelona to see a specialist in the field and after numerous scans, observations and symptom analysis, Amy said in February 2022 she was diagnosed craniocervical instability (CCI) – where the skull is not securely attached to the cervical spine.
It was also suspected Amy’s spinal cord was tethered – a condition where the spinal cord is attached to the tissue around the spinal canal, meaning it cannot move freely – and in October 2024 she was able to receive this diagnosis from a specialist in New York.
The conditions mean Amy’s energy levels fluctuate on a daily basis. There are days where she cannot get out of bed, except to use the toilet, and others where she manages one or two hours of low-level function.
“It’s very difficult for me to stand for longer than a few minutes,” she said. “I can’t take my daughter to the park or for days out, I can’t be in restaurants or cafes because the ambient noise worsens my symptoms a lot.”
Amy said she still has ‘energy’ and ‘zest for life’ but her body cannot express it
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Amy said she is now evaluating several treatment options for her CCI diagnosis. The first is a procedure that takes stem cells from bone barrow and injects them through the throat and into the ligaments at the back of the skull, and the second which is a “brutal” neurosurgery using hardware to fuse the skull and the cervical spine.
She said the latter would only be available to her in Spain at a cost of £80,000 or America for upwards of £200,000. Amy added she must also have an operation to release her tethered spinal cord, which could cost between £17,000 and £20,000.
To help with the fees Amy launched Not Dead Apparel in May 2023 after feeling “incredibly uncomfortable just asking for donations”. The business, of which Amy is the sole owner, sells T-shirts, sweaters, hats and bags embroidered with slogans showcasing her “very dry sense of humour”.
Some of the slogans read: ‘What fresh hell is this’, ‘Not that good with people’ and ‘Tired Girl’s Club’. “I do all of the design, admin and customer service aspects and then I outsource the embroidery, since my body just isn’t in a place to do anything physical right now,” Amy said.
“I’d say humour has been the most important tool to get me through all of this and the designs often resonate with people going through all kinds of struggles.” While it was only her family and friends who purchased her wares at first, the business boomed in March 2024 after an influencer shared one of her hats on Instagram.
Amy prior to becoming unwell
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“The response has been wonderful… it’s been a joyous reminder of the kindness of strangers.” Amy has recently set up an online store where all of the profits from her sales go directly towards her medical treatment, as well as any funds she raises through her GoFundMe page, which has more than £8,000 in donations so far.
Looking ahead, she is hoping to get her first surgery, the tethered spinal cord release, under way this year. “It’s been almost eight years of illness, so I really don’t want to get to the 10-year mark,” she said. “To have your life put on hold for a decade is a tough thing to accept.”
The website for Not Dead Apparel can be found here: