KENT, United Kingdom — A bodybuilder in peak fitness after losing over 200 pounds is now fighting for her life and bedbound due to a medical ailment which is slowly decapitating her internally. Melody Wakelin says she can barely walk and feels ”like a piece of furniture” rather than a human. The cause is a strange condition called atlanto-axial instability (AAI).
The 41-year-old is now facing a race against time to raise money for a pioneering surgery in Spain to hopefully correct her AAI.
What Is Atlanto-Axial 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 lead to death in extreme cases.
According to Massachusetts General Hospital, this is a condition that “affects the bones in the upper spine or neck under the base of the skull. The joint between the upper spine and base of the skull is called the atlanto-axial joint.” AAI is more common among children with Down syndrome and is less common among adults.
The mother of two first fell ill in 2017, just three weeks after competing in a bodybuilding competition. Wakelin experienced symptoms including tremors, muscle spasms, vision problems and difficulty standing. She 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 correctly diagnosed her with AAI 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.
The former bodybuilder’s 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 nearly $150,000 to undergo life-saving surgery abroad.
“I went from being a bodybuilding to be bedbound,” says Wakelin, a former personal trainer and self-employed barber, from the United Kingdom, in an online video.
“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 paralyzed or die.”
Fitness fanatic Melody fell in love with bodybuilding after losing 16.5 stone (over 224 pounds). Just weeks after coming second in a competition in 2017, however, 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 the U.K.’s National Health Service and private specialists, including neurologists and surgeons. She underwent tests and scans after the symptoms became unbearable.
“I had to quit work, and I can’t really look after the kids or even leave the house,” the 41-year-old explains in her video.
“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 says she conducted her own research to find a spinal specialist based in Barcelona. She spent thousands of dollars on flights and private fees including a consultation, MRI, and imaging CT scans.
All of this led to a diagnosis of both atlanto-axial instability (AAI) and occult tethered cord syndrome (OTCS). The diagnosis would lead to the need for two rounds of surgery that comes with at a hefty cost at £115,000 (roughly $145,000).
“The surgery I need isn’t available on the NHS, so either way I’d have to pay,” Melody says. “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.”
Her husband has set-up a GoFundMe page and the family are trying to raise the money to cover all the costs.
“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.”
South West News Service writer Katie Pearson contributed to this report.
