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Bodybuilder left bedbound by condition which is seeing her slowly “internally decapitated”[1]
A bodybuilder in peak fitness after losing 16 stone has been left bedbound by a condition which is seeing her slowly “internally decapitated”. Melody Wakelin, 41, can barely walk and feels ”like a piece of furniture” rather than a human. She is facing a race against time raise money for pioneering surgery in Spain after being diagnosed with atlantoaxial instability (AAI).
The condition means her brain is sinking into her spinal canal and her skull is sliding down onto her neck. Even a slight bump on the head or sudden neck movement could “completely crush” her brain stem and in extreme cases lead to death. The mum-of-two first fell ill in 2017 – just three weeks after competing in a bodybuilding competition.
She experienced symptoms including tremors, muscle spasms, vision problems and difficulty standing. Melody went to countless doctors and specialist over the years, but no one could find the cause of her issues. Doctors even suggested she might have Munchausen’s syndrome – where a person seeks medical attention for fake or self-inflicted symptoms.
After doing her own research, Melody found a leading spinal surgeon in Barcelona, Spain, who was correctly diagnosed her in September 2023. Despite being unsure what caused the illness, the specialist believes it was connected to her condition Ehlers-Danlos Syndrome – which affects her connective tissue. Her health has now deteriorated to the point where she can’t walk – causing her to gain back the weight she had lost.
Melody fears she may “die at any moment” and is desperate to raise GBP115k to undergo life-saving surgery abroad. Melody, a former personal trainer and self-employed barber, from Ashford, Kent, said: “I went from being a bodybuilding to be bedbound. “I can’t walk, and I struggle to stand and even sit up now. “I could be internally decapitated if I bump my head or move my head too suddenly – it’s terrifying. “I’ve deteriorated to the point where I need a wheelchair to get about and I’ve lost all independence. “I’m basically a piece of furniture and can’t move. “I’m terrified I don’t get the surgery, it will get worse, and I’ll be left paralysed or die.” Fitness fanatic Melody fell in love with bodybuilding after losing 16.5 stone – going from 25st to 8st 7lbs and a size 8 to 10. But just weeks after coming second in a competition in 2017, she started experience severe “brain fog”.
Melody continued to experience more debilitating symptoms and had no idea why it began. She went to “countless appointments” with NHS and private specialists, including neurologists and surgeons. She underwent tests, scans and multiple trips to A&E after the symptoms become “unbearable”.
Melody – who lives at home with her two kids Hudson, 11, and Wentworth, 13, and husband Jack Wakelin, 36, a project manager – said: “I had to quit work, and I can’t really look after the kids or even leave the house. “My kids were five and seven when this first happened – most upsetting for me. “Always wanted to be a mother and having this happen has completely taken it away from me. “I ended up gaining the weight back and some doctors suggested that was the cause of my problems. “I had glimmers of hope with specialist, but all the tests came back clear. “Some doctors even accused me of faking my symptoms for sympathy. “I started to lose hope.” Melody conducted her own research found a spinal specialist based in Barcelona, Spain. She forked out GBP4k to flights and private fees including a consultation, MRI and imaging CT scans. To Melody’s relief, she was diagnosed with atlantoaxial instability (AAI) and occult tethered cord syndrome (OTCS).
Despite getting a diagnosis, she would still need to undergo two rounds of surgery that comes with at a hefty cost at GBP115k. Melody said: “The surgery I need isn’t available on the NHS, so either way I’d have to pay. “My best hope at being treated is with the spinal surgeon I found in Spain because he is one of the top specialists in the world with experience performing this surgery on a person with EDS. “However it’s incredibly expensive, so I’m desperately fundraising.” Melody would need two separate surgeries, which would require two trips to Barcelona. Her husband has set-up a GoFundMe page and the family are trying to raise GBP115,000 to cover all the costs.
She said: “I’m really scared, I’m getting worse each day and I’m scared I might die. “I’ve read about the surgery being life-changing and it’s my final hope. “I’m scared I won’t get to see my kids grow-up and I’ll do anything to feel normal again.” https://www.gofundme.com/f/life-saving-surgery-for-melody