Are You One Of Those Who Judge Other People’s Parenting Skills? You Should Read This Story To Understand How It Works
There is a need to be the best kind of parent you ought to be to your children while you extend equal right to other parents to be the kind of parent they want to be to their own children, too.
A young mother Raven Ford, 23, whose baby has a rare skin disease, was told by medics to bathe the one-year-old in bleach every other day, Dailymail reports.
Miss Ford’s daughter, Amelia Moe suffers from a rare autoimmune disorder called lamellar ichthyosis, which sees her skin thicken and shed every couple of weeks; like a snake’s.
According to reports, Amelia’s skin cannot tolerate soap, as it is so sensitive, hence the reason doctors told Ford to wash her daughter in bleach to prevent her scaly skin becoming infected.
The child’s hard, shedding skin requires near constant moisturization to keep it supple and prevent it from snagging her clothes, and her hair, skin and nails also.
Amelia’s condition also forces Ms Ford of Superior, Wisconsin, USA – also mom to Benjamin Faice, 6, and Cole Ford, 2, to endure cruel comments from strangers, with people assuming Amelia is severely sun burnt and one even calling the retail worker ‘selfish’ for wanting more children who could also develop lamellar ichthyosis.
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”That was the most upsetting comment. I didn’t even know this person. She just butted in with a conversation I was having with a friend.
Amelia is such an easy-going child. Yes, we have to do things a little differently, but she is still very happy so it hurts to be called selfish. When people do make these comments, I either ignore them or try to educate by explaining what ichthyosis is.
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.”
Speaking on how she bathes Amelia, Ms Ford said:
”Because Amelia can’t use soap, 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.”
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Aside from bathing, Amelia also requires an intensive daily healthcare regimen.
”She takes fluoride supplements for her teeth, as we were warned the condition can cause some dental abnormalities.
We also have to put petroleum jelly round her mouth when she eats otherwise the food will stain her skin. Her hair is quite brittle and can fall out easily, and her nails have begun to build up and harden too.”
Over time, Amelia’s skin has settled into a cycle of building up and shedding.
”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.
The mom-of-3 said she and her partner, Gary Moe, 43 -Amelia’s dad, knew the moment she was born at St Mary’s Medical Centre in Duluth, Minnesota, that something was wrong.
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“She looked like a little plastic doll. She had this build-up of really thick skin, which looked very tight and shiny. She couldn’t close her mouth or eyes, so doctors weren’t sure at first if she had eyelids, and it covered her hands and feet so much that there were no visible prints.”
Due to lamellar ichthyosis being rare, doctors were initially baffled as to what was wrong, until a specialist from the University of Minnesota confirmed the diagnosis the following day but was unable to say how severe it was.
”The not knowing was the worst feeling in the world. We were told not to Google ichthyosis, but I couldn’t help myself. I just wanted to know what was happening.
Some forms are really severe, and carry quite bleak life expectancies, so it was terrifying thinking Amelia might have to go through that. I had so many questions, and just needed to know what type she had.”
The family is waiting for the results of genetic testing to determine what stage Amelia’s lamellar ichthyosis is.
She stayed in hospital for the first 10 days of her life, which saw her hardened skin crack and bleed at the joints, forcing her parents and nurses to apply ointments around her eyes every couple of hours.
Ms Ford who is speaking out to educate people on lamellar ichthyosis says:
”I’d really like people to stop judging things they think are out of the ordinary, especially parenting choices.”
Photo credit: PA Real Life