Moonshine Children
A Life without Light
The lump of sun block in Merve’s hand is a good centimetre thick. She smears the entire amount onto her face before wrapping several scarves around her head, then adds a helmet-like outfit. She resembles a beekeeper, a fire-fighter or a “faceless person† — or so strangers tell her. The 19-year-old Turkish girl suffers from XP, or xeroderma pigmentosum, an extremely rare skin disorder. Merve is a moonshine child, for each ray of sunshine wreaks havoc in her skin cells. Normally, an enzyme repairs the damage, but it is missing in people afflicted with XP, who suffer from pigment blotches and skin cancer, and whose epidermises are incapable of regeneration. After more than 100 surgeries, Merve’s face has been completely transplanted with skin from her stomach. There are approximately 90 XP patients in Germany, and 2,000 worldwide, of a global population of 6 billion. And Merve is one of them. Both of her parents carry an extremely rare and defective gene, the apparent cause of her malady. But precisely why she should have been stricken remains an unsolved mystery. Her brother, for instance, remains completely healthy. Medical research in this area is proceeding only very slowly. XP is untreatable, and standard cancer therapies are ineffective. The skin creams are improving, but at the moment, there is no hope of a permanent cure. Meanwhile, Merve spends a great deal of time alone. She enjoys reading, writing poetry, and painting. “With this disease, you are never really happy, but crying doesn’t do any good, and it’s been 10 years since I shed any tears over my situation,† says the self-confident young woman. Her boyfriend is a great source of strength. He is healthy, and his girlfriend’s appearance does not bother him in the least. He loves her smile, and her, just as they are. The couple even plans to marry, once Merve has finished her studies. 37° accompanies Merve and eight-year-old Markus, who also faces the daily challenge of XP, to a “moonshine camp† in the USA. Children travel from all over the world to this annual summer camp, located north of New York City, to spend two weeks of the year doing all the things other children do. They play, splash around in the pool, or play soccer – and just have fun. But always at night, when there is no sunshine to harm them.
