Rare "Moon Child" Disease Forces 11-Year-Old to Wear Spacesuit Outdoors

It was the dermatologist who announced it: Souhaila is a "child of the moon". Hypersensitive to UV rays, she "must be permanently protected from the sun, neon lights..." "My daughter has to go out in a kind of spacesuit," said her father, Ibrahim Jouid, adding that to ensure her protection, "anti-UV filters have been placed on all the windows of our house and car, in her classroom, and also in the dance studio she has been attending as an extracurricular activity since September." Except for a few classmates who call her an "astronaut," Souhaila leads a nearly normal social life, reports 7sur7.

In Belgium, about ten children suffer from this rare disease. Thus, the costs related to her treatment are not reimbursed, laments the father who continues: "Fortunately, we can count on the Lola and children of the moon association" to support us psychologically and logistically. Without it, we would have had to spend more than 3,000 euros on this equipment." "It’s not normal," he continues, "that this type of disease is not recognized and that we can only count on an association."

To better publicize this disease, Souhaila’s father has created an Instagram account to develop awareness on social networks. In addition, a Leetchi kitty has been set up to support Souhaila and her family.