Little boy covered in scales must have them scraped off his body twice a day to save his life

In a heart-wrenching story, a young boy battles a rare and devastating condition that covers his body in scales. To ensure his survival, he undergoes the painful process of having these scales scraped off not once, but twice a day.

Evan Fasciano, now five, was born with Harlequin Ichthyosis, a genetic disorder that leaves him with scales across his entire body. His parents try and keep him scale free to minimise his discomfort

This brave child’s life is a testament to strength and resilience in the face of extreme adversity. The daily routine of scale removal, while excruciatingly painful, is a vital necessity. Without this meticulous care, the scales could accumulate and threaten his health and well-being.

Suffering from the severest form of the disease, Evan is at constant risk of infection - requiring him to have two baths a day so his 33-year-old mother De De can scrub off the scales

The boy’s journey is a tribute to the unwavering dedication of his caregivers. Their commitment to his care, despite the emotional toll it undoubtedly takes, highlights the boundless love and determination within families facing such challenges. The process is not only physically demanding but emotionally draining, as they watch their little one endure this agonizing routine.

When Evan was born his skin was so thick he couldn't open his eyes for the first two weeks. He spent two months in newborn ICU

Yet, amidst the pain and challenges, this young boy’s spirit shines through. His courage is a beacon of hope, reminding us of the strength that can be summoned even in the darkest of times. His story raises awareness about the need for medical research and support for rare conditions, highlighting the urgent necessity for breakthroughs that could potentially transform lives like his.

'During bath time, I use my hands to remove most of the scales on Evan's skin- and then we'll use a wash cloth or exfoliating cloth,' explained his mother, De De

This little boy’s daily battle against his condition is a humbling reminder of the fragility of life and the incredible human capacity to endure. His story serves as an inspiration to cherish each moment and to rally together in the face of adversity, supporting one another with empathy and compassion.

 After bath time, either she or her husband Joe covers Evan in Aquaphor to moisturise and protect his skin from getting too dry, with a second prescription emollient used for areas of particular concern.

Evan with his younger brother, Vincenzo. Their father said: 'Some people stare at Evan - and people who don't know him will do a double take, so we're encouraging him to make sure he says hello to everyone who does'

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