Raven Ford, 23, whose daughter Amelia Moe, one, suffers from lamellar ichthyosis and cannot tolerate soap, was told by doctors to wash her in bleach to prevent her scaly skin becoming infected.
The youngsters’ hard, shedding skin requires near constant moisturisation to keep it supple and prevent it snagging her clothes, with Amelia’s hair, skin and nails also being affected.
Amelia’s condition also forces Ms Ford to endure cruel comments from strangers, with people assuming Amelia is severely sunburnt and one even calling the retail worker selfish for wanting more children who could also develop lamellar ichthyosis.
She said: ‘You don’t know what someone is dealing with, or why they are making the choices they are. Everyone has their own reasons, don’t assume it’s all down to bad parenting.’
Ford said: ‘I put two tablespoons of bleach in her bath water every other day.
‘It’s controversial, and not everybody is comfortable with it, but it’s been recommended by dermatologists and it’s the only way to kill the bacteria under her scales.
‘If we don’t do this, she can get infections or pockets of oil, which show up like yellow bumps on her scalp.’
Aside from bathing, Amelia also requires an intensive daily healthcare regimen.
Ford said: ‘She starts out smooth, then her skin gets darker and shinier as it builds up. Eventually, she’ll be unable to close her eyes, at which point we have to start using a type of topical medication called Tazorac cream.
‘Then, her skin will start to shed and peel. Thankfully it doesn’t bleed anymore like it did when she was first born.
‘Her hands and feet are largely unaffected, but the peeling on her face takes around a week and the peeling on her scalp takes two.
‘Her torso is more or less always scaly, with a texture like you’re petting a snake.’
Amelia’s condition means she does not have sweat pores, which makes summer particularly difficult, forcing her parents to keep her indoors and use ice packs to keep her cool.