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If This Young Girl Doesn’t Scrub Her Skin Every Two Hours She Could Die

The Uncontrollable Itch

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Imagine having an itch that you just can’t seem to scratch. You try as hard as you might, but no matter what it just can’t seem to be alleviated. Seems like a nightmare, right? Well, for one little girl this happens to be her life 24/7.

Moisturize and Exfoliate

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For most cases of itchy skin, it is a result of the skin being dry, which can easily be relieved by applying lotion or exfoliating. However, for people who suffer from skin conditions like eczema and psoriasis, it isn’t so easy. Medical ointments and creams are usually needed to provide relief.

The Case of Maddie Hoffman

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When it comes to nine year-old Maddie Hoffman, she just wants to be like the other girls her age. Sadly, Maddie suffers from a rare genetic skin condition that could be deadly if she doesn’t take proper precautions.

Rare and Deadly Skin Condition

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This rare medical condition is known as epidermolytic ichtyosis and results in Maddie’s skin shedding at a rate that is ten times faster than a normal child. If this type of condition isn’t treated routinely, her skin can become dry and cracked, which leaves her vulnerable to infections and can render her unable to move.

The Simple Facts

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Epidermolytic ichtyosis is first apparent shortly after birth. The skin appears red and scaling with severe blistering.  As time goes on, the skin begins to thicken, which can lead to itchy and smelly skin that is more likely to have an infection.

Sporadic or Inherited?

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While some cases of the disease are sporadic, which means it is triggered by a mutation in one of the responsible genes, most cases of the skin condition are inherited. If the parents happen to have one of the dormant genes, it is 50% likely that the mutation can be inherited by the child, triggering the skin condition.

No Cure Today

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Sadly, there is no cure for Epidermolytic ichtyosis. Treatments  include topical oitments that help shed the outer layers of skin as well as retinoids that improve symptoms even though they can increase fragility in the skin.

A Rigid Skincare Regime

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For Maddie, every day revolves around her skincare regime. Every two hours, this brave little girl must be scrubbed from head to toe in order to remove her dead skin cells. Since she produces more than other children her age, skipping one treatment could put her at risk for infection.

Mistaken for a Victim

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As a young child, Maddie’s skin was very flaky and raw. In fact, she would often be mistaken for a burn victim. Thankfully, due to her strict daily care, her condition has improved as she’s gotten older.

A Short Lease on Life

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When Maddie was born, doctors didn’t have a positive outlook for her survival. However, hydration and her mother’s dedication towards carefully removing her skin helped her defy the odds. Maddie is lucky to have such a dedicated parent.

A Lifetime of Pain

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Unfortunately, since a cure has yet to be developed, these daily scrubs are something Maddie will have to endure for the rest of her life. Thankfully, she has an amazing team of doctors keeping an eye on her condition, so they can treat infections swiftly.

Outliving Her Child

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Maddie’s mother, Emily, still lives with the fear that she will outlive her daughter daily. When Maddie was first born, she wasn’t even allowed to hold her until she was seven days old. Even then, she had to be an isolation room and had to wear gloves as well as a mask.

Deadly for a Baby

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Emily had this to say regarding her daughter’s condition, “It was visible at birth that she had ichthyosis and shortly after that all the layers of skin fell off in sheets, she was bright red and looked like a burn victim. The ER doctor told us, ‘ You realise your baby may not survive?’ It was very scary, she was touch and go for the first two weeks. Ichthyosis can be deadly when a baby is first born, Maddie needed to remain hydrated, stay infection free and quarantined, we even had to put on gloves to touch her.”

Hours of Skin Flaking

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According to Emily, every hour that goes by for Maddie her skin makes it harder for her to move and begins to flake off. They battle blisters daily and, with Maddie’s feet being the most impacted, she tends to have open wounds and a high risk for skin infections.

A Positive Attitude

Image: Maddie’s Big Dream

Thankfully, Maddie’s attitude is one that keeps her and her mother going. Maddie is a huge anti-bullying advocate and wants to help children stay motivated and positive. Her biggest dream is to one day dance with Ellen DeGeneres. Regardless of the daily plain, Maddie plans to make every single day of her life count. We see a very bright future ahead of her.

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