I started this book with an open mind, aware that writers often get medical conditions and disabilities off, but Fiona is one who without a doubt had no business handling a genetic condition like mine: Fibrodysplasia Ossificans Progressiva.
I suffer from FOP, along with my identical twin sister, so I know what I'm talking about.
Her first mistake was referring to it as the highly offensive, and inaccurate, ‘Stone Man Syndrome’.
That aside, despite her acknowledgements page referencing fine resources for FOP, she clearly must not have been listening and chose to disrespect a disability in favour of selling her stupid book.
To paraphrase, my condition, FOP, has very distinctive and clear symptoms, and the negative impacts it has. For the sake of her horror story, she’s been very selective and used elements of the disability as a plot device when it was convenient.
It was a major red flag when she introduced FOP to the reader as a syndrome where the sufferer has as many years left to live as there are letters in its name.
She’s done the poorest handling and misinterpretation of FOP I have ever come across, after BBC’s Casualty mess.
She had not in any way explained how FOP had affected Jakey’s mobility, pain threshold & management, or daily life. FOP has no pattern, and each individual has a completely unique set of flare ups that have impacted our health such as limb movement, but she completely forgot or intentionally ignored this: instead, she disgustingly explained that Jakey ‘limps’, has a ‘wonky head’, his ‘arms don’t work’, and struggles to breathe at the drop of a hat.
The lack of this most important aspect of FOP raises too many questions; how far has the FOP affected him? Can he stand on his own? How well can he walk? Can he still run? Does he use a walking stick, wheelchair, or need other equipment? Is he sedentary? How has he adjusted to flare ups and loss of mobility? Can he still brush his own teeth, or dress himself? Can he eat solid foods? Does he have difficulty with hobbies or other daily tasks? When was his last flare up? What meds, if any, is he on? Are his parents in contact with other FOPers?
His mobility or lack thereof is inconsistent. Adjusted either for the plot’s convenience, or lack of understanding FOP, or plain laziness. For example, at one point he’s so weak he has to drag himself across the floor to navigate his home. Later she has him walking up and down stairs.
She wrote him off as being in excruciating pain whenever it served as a plot device, in a constant state of depression, he’s for some reason fragile and weak, and been infantilised. He is a seven year old, but she wrote him as too frail to wash himself, or ride a pushbike.
It was impressive in that she did explain the other setbacks of FOP such as no surgery, no intramuscular injections, no tissue trauma, no falls or bumps, no viruses or colds that can all trigger a flare up; but failed miserably enough in all other areas to the point that she’s presented a dangerously inaccurate portrayal of FOP. I sincerely hope all who read this book will ignore her depiction, and seek out the truth from real resources and FOP support guides.
It was horrific in one chapter when she described Jakey clawing and scratching at a flare up site to enable him to literally rip his skin and bleed heavily. It was for shock value, it was not realistic at all, and tactless. A flare up’s pain level can vary, and it can reach the immeasurable range – but what’s stable is that an FOPer will do what they can NOT to touch or apply pressure to the site. Mutilation / self harm is nothing but ignorant & disgusting.
In a lot of areas she sensationalised and played up the ‘body horror’ of FOP, which was indescribable to me as a sufferer. She’d liken the bone to alien invasions, stone, that Jakey was helpless and useless, how deformed the disease can turn a person, how macabre it is.
She wasn’t showing FOP as ‘another genetic condition’, a character who happens to be disabled, but as an excuse and an opportunity to describe how ‘creepy and unnatural’ it is, like a sideshow oddity – the fact that her villain is a collector of the macabre serves as proof of her weak 'plot'.
She's chosen FOP for the horror, to hit a nerve - because a lot of her prose was dedicated to describing how deformed & misshapen Jakey is, how the condition has a life of its own and controls Jakey's body, describing it as a parasite.
What’s ended up as the biggest mistake, other than Stone Man Syndrome’s horrible freak side-show name dominating the real name, is that her plot twist was Jakey’s father Erdman is an identical twin whose brother had FOP – except he, Erdman, did not.
This is the biggest mistake you can make in genetics: identical twins share all their genetics, and yes, that includes disabilities. It was already calling for suspension of disbelief because as FOP is so rare, with 1-in-2-million cases, there’s about five pairs of identical twins. My sister and I are one of them; so there’s no plausible odds that in her story, she’s got three FOPers related by blood. I still cannot deal with how she does not recognise that FOP Is hereditary, and how identical twin genetics work.
Please, invest yourself in and spread awareness of my condition, to prevent further misdiagnoses (can be fatal), and to help us find a cure! This book is getting a TV series adaption; awareness is always helpful, but it's two steps back when the audience has access to horrible misrepresentation and facts.