One in 500 000 babies is born with this condition which is also known as Harlequin fetus. It’s almost always fatal because of the skin’s difficulty to hold water and its lack of protecting from bacterias or diseases.
These are some the most notable cases of the Harlequin fetus diseases
Hunter Steinitz, 18, has a rare genetic condition, harlequin ichthyosis, which means her skin is too thick and she has dry patches all over the body.
She is unable to close her eyes, wears a wig because her hair follicles are blocked by skin, and is in constant danger of dehydrating because she cannot sweat.
Nusrit "Nelly" Shaheen, born in 1984 (age 33) is the longest-living survivor of Harlequin-Type Ichthyosis. She lives in Coventry, and was one of nine children. Four of her siblings had Harlequin, but died at a young age.
Many survivors of Harlequin are predicted to die before or during their teens, but Nelly is now in her 30's and contributing to living a long, healthy and rewarding life.
Stephanie Turner, 23, has Harlequin ichthyosis, which causes her skin to be around 10 times thicker than normal and grow at an extremely fast rate. As a result the skin is easily cracked and susceptible to infection.
Despite her disadvantages, Stephanie, from Wynn, USA, became the first person with Harlequin to give birth. Stephanie Turner's husband, Curtis, confirmed that his wife died unexpectedly on Friday, March 3/2017.
Brenna Westlake, born on Dec. 19, 2011, is one of the few individuals who has Harlequin Ichthyosis (also known as Harlequin fetus or baby).
Courtney Westlake, who was unaware her daughter had the condition until she was born, was shocked the first time she saw her. Big chunks of skin were covering Brenna's body, like thick scales with deep red fissures between them. Her eyes were pulled so tight because of the skin that they were flipped inside out, making them look bloody.
Ryan Gonzáles is an American who was born in San Diego with a rare condition called Harlequin ichthyosis. Harlequin Ichtyosis caused Ryan to have deep red cracks in his skin and his eyes turned inside out. Ryan’s body produces too many skin cells and his skin is not shedded properly – it sheds seven to ten times faster than normal leading to a hard, Armour-like skin in red.
Mason who was born with Harlequin Ichthyosis. This rare disease only affects one in five million babies. Doctors told the van Dyk family Mason would only live between one and five days - he defied all odds and lived.
Mui suffers from Harlequin ichthyosis that leaves the skin on her face and body red raw and open to infection. But, now 24, she refuses to let it get in the way of her life –she has a full-time job, plays sport and is embarking on a career as public speaker– educating and inspiring others about the challenges of looking "visibly different."
A baby girl with Harlequin Ichthyosis(near-total missing external body skin), was born at a city hospital in 2016. The baby died after just two days, as the chances of survival in this diseases are very thin.