This “terrible” disease causes babies’ skin to grow 10 times faster than normal.

Harper Foy from Washington is currently the youngest person with Harlequin Ichthyosis. This is a systemic genetic disorder. People with this disease grow skin 10 times faster than normal, and it also peels off quickly.

Doctors believe the disease will kill her because she is too young to fight off the complications. To survive, she needs to keep her skin constantly moisturized.

Doctors saw no signs of the disease in her father, Kevin, 38, and mother, Angie, 40, so they did not issue a warning before birth. But unexpectedly, their daughter was diagnosed with this rare disease.

While still in the womb, Harper’s skin tissue grew uncontrollably, forming large clumps on her hands and feet when she was born. Immediately after birth, Foy was placed in intensive care, and doctors considered removing the clumps of skin, which would have meant losing four fingers.

After a month in the hospital to prevent infection, Harper triumphed over death and was discharged home. Although there is currently no cure, the long-term treatment of keeping her almost constantly wet in a bathtub will allow her to live a normal life.

Harper’s family is raising money to buy a special bathtub for her first birthday next month – a party Kevin and Angie once thought would never happen. The bathtub will be imported directly from Japan, at a price of $6,000 plus $15,000 for installation.

She said: ‘Her skin stays good for two hours after bathing and then starts to itch again.

‘We spend a few hundred pounds a month on moisturiser for her, but the most expensive thing is clothes.

‘We get through a tonne of clothes because we have to change her a few times a day because the moisturiser has the consistency of Vaseline.

‘It’s really greasy and it’s hard to get all of the grease out.

‘We have two washing machines: one for our clothes and one for Harper’s clothes and we have to clean the washing machine often because it gets clogged up with grease.’

Despite the expense and effort it takes to keep Harper’s skin in good condition, Angie and Kevin’s round the clock care has so far been a success, with Harper only having been hospitalised once due to her condition in four years.

While she can expect to live a normal life with the condition, she will have to keep up the constant moisturising and exfoliation until the day she dies.

Her parents are now experts at keeping Harper’s skin in prime condition and are even getting Harper ready to start school next year when she turns five.

Angie said: ‘Right now, I think she only has a slight idea how different she is but I think there will come a time when she goes to school when she’ll really know.

‘We’re building her self-confidence before that time comes.