Harlequin's Fetus

A video circulating online, purporting to depict an "alien" from Romania, actually depicts a human child suffering from an extremely rare genetic disorder known as "Harlequin Fetus." This serious condition, occurring once in half a million births, leads to deformities and extremely thin skin, significantly reducing the newborn's chances of survival. Only a handful of people with this syndrome live in the United States, and they endure demanding daily care. Despite their dramatic circumstances, these girls' stories demonstrate remarkable strength and determination in battling the disease.

For some time now, a "delicious" (or maybe?) video has been circulating online, supposedly depicting an "alien," filmed in Romania. However, it actually depicts a human child afflicted with a genetic disorder known as "Harlequin Fetus" (scientists call it "Autosomatic Recession" or, in Latin, Harlequin Ichthyosis ).

On the right - medical diagram of the Harlequin fetus

This mysterious disease occurs extremely rarely—typically occurring in one in half a million births. It causes the baby's skin to become extremely thin and envelop the entire fetus. After birth, deep wounds develop, along with bulging mouths and eyes. The body is generally deformed. Affected newborns die after a few weeks due to rapid dehydration, collapse, and poor temperature regulation. If they survive, they develop a condition called Lamellar Ichthyosis or Congenital Ichthyosiform Erythroderma .

Unfortunately, the gene responsible for this disease has not yet been found.

Survival of a person with this genetic disorder is extremely rare, with a one-in-a-million chance. There are at least four people living with the "Harlequin fetus" in the United States: Lucy and Hannah Betts (18 and 15 years old) and Dana and Lara Bowen (8 and 1.5 years old). These girls undergo grueling daily treatments. They wake up very early in the morning and take a two-hour bath to soften their skin. They then scrub away the dry skin, leaving as much skin as possible in the tub, before wrapping their bodies in a moisturizing sheet. Further baths occur in the afternoon and late evening. Despite these treatments, their skin is constantly exposed to infections, and the girls are also blind.

Lucy, 18, is the longest-living child with this condition. It's truly unlikely, however, that the girls are sisters. As I mentioned earlier, the odds of a child being born with Harlequin fetus syndrome are 1 in 500,000, while the odds of a second child also having the condition are 1 in 2,000, so the odds of both sisters being carriers of the condition are 1 in a billion.