A rare skin condition that only affects about one in 600,000 people worldwide has left this toddler with head-to-toe itchy scales.
Daniel Maples, an 18-month-old boy from Essex, England, was born with lamellar ichthyosis, which occurs when a child inherits an abnormal gene from both parents. Lamellar ichthyosis develops at birth and continues throughout a person’s life — causing their skin to become thickened and cracked, resembling the scales on a fish.
Not only does this condition produce a skin cell turnover that is six times faster than normal, its sufferers often times also experience issues with their eyes, overheating, hair loss, constricted blood flow to toes and fingers, and trouble bending their joints.
Since there isn’t a cure, his parents, Emma Holby and Steve Maples, must make sure that they continuously cover his body in medical grade moisturizer, which is designed to hydrate, every few hours to prevent his fragile skin from cracking.
The boy’s father describes how this condition has affected his son’s life:
The skin is thick and it peels off and it takes about two months to completely come off. Over time he now has to be creamed every four to six hours each day and every three hours throughout the night. It’s a very high maintenance condition and he also requires two or three showers a day as well as eye drops because he doesn’t blink. He’s been in and out of hospital with skin infections because of the condition. It will continue throughout his life and there’s no cure for it. When he is older he’ll have to do it all himself.
While society’s reaction to the appearance of ichthyosis (from the ancient Greek word for fish) can sometimes be hostile and unsympathetic, Daniel’s parents say he is a joyful child who will be taught how to lead a confident, normal life.
They are presently trying to raise money for The Ichthyosis Support Group, the only registered charity in the UK supporting individuals and families with all forms of ichthyosis, in an effort to find a cure.