Born in Pain Raised in Strength The Unbreakable Spirit of Those Living with Harlequin Ichthyosis

Being born with Harlequin Ichthyosis means entering the world with skin that behaves like rigid armor—thick, dry, and unable to stretch or protect properly. This extremely rare genetic condition, affecting roughly one in a million newborns, causes the skin to form hard, plate-like scales that can lead to dehydration, infection, and serious complications within hours of birth. It is a lifelong struggle that begins from the very first breath.

In 2019, the world was moved by the heartbreaking case of baby Giovannino in Italy. Born in a hospital in Turin, he was diagnosed with Harlequin Ichthyosis and abandoned soon after birth. Left without parents, the medical staff took it upon themselves to care for him. They worked tirelessly to ensure he received the comfort and attention every child deserves. The story of this small, fragile boy resonated across the globe, sparking conversations about compassion, responsibility, and the meaning of humanity.

Yet, amid the challenges of this condition, there are also remarkable stories of resilience and hope. One such example is Nelly Shaheen from the United Kingdom. Born in 1984 with the same disorder, doctors did not expect her to survive infancy. But Nelly defied every prediction. Through years of daily care, medical treatments, and an unbreakable will, she not only survived but thrived.

By her early thirties, Nelly had become a sports coach and motivational speaker, using her story to encourage others to embrace life regardless of circumstance. Her success demonstrated that Harlequin Ichthyosis, while physically demanding, does not define the limits of a person’s spirit or potential. Her journey has since inspired thousands, showing that strength can grow even from the most painful beginnings.

Both Giovannino and Nelly’s stories shine a light on the challenges faced by those living with rare genetic conditions, as well as the compassion of those who care for them. They remind the world that courage and kindness can coexist even in the most difficult circumstances.

From tragedy to triumph, these stories reveal something universal about humanity—the will to fight, to nurture, and to find hope in the face of adversity. Harlequin Ichthyosis may affect only a handful of people worldwide, but the lessons drawn from it speak to everyone: the power of love, resilience, and the unbreakable strength of the human spirit.