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In recent days, Saliha, a mother from the city of Beni Mellal, has issued an urgent appeal to save her two daughters, who suffer from a rare condition known as «butterfly disease», as they endure a daily struggle with pain.
Speaking to Yabiladi, Saliha, a divorced mother, described the hardship she faces every day while caring for her two daughters alone under difficult social and health conditions. With no breadwinner in the family, she says she is unable to work, as caring for the girls requires her full attention.
The mother said her first daughter died years ago from complications linked to the disease. She later gave birth to her second daughter, Fatima Zahra, now 9, and then to her third daughter, Naama, aged 5, only to find herself once again confronting the same suffering.
She explained that Fatima Zahra’s condition is the most severe, as she «cannot walk, suffers from bone deformities, and has an enlarged heart». She added that Fatima Zahra is in the third stage of the disease, while her sister Naama is in the second. «Their skin peels off with the slightest movement», she said.
Fighting back tears, the mother said her eldest daughter needs heart surgery, but doctors have told her that this type of operation is performed outside Morocco, at a time when the family cannot even afford treatment or food.
«I do not feel like I am living. My daughters and I are in an extremely difficult situation. I rely solely on help from charitable people because I am unable to work, provide treatment, or even afford food».
A rare disease that turns the slightest friction into bleeding wounds
To learn more about the condition, Chaimae Berhou, president of the Butterfly Children Association in Fez, the first association founded in 2025 to support butterfly children in Morocco, explained that «butterfly disease» is the common name for a rare genetic disorder medically known as Epidermolysis Bullosa, which causes extreme fragility of the skin.
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Berhou, who is also an orthoptist, said that simply touching a patient’s skin, or even light friction, can cause painful blisters, ulcers, and skin tears. The disease, she explained, is known by this name because the patient’s skin is «as delicate as a butterfly’s wing».
She noted that even clothing can cause wounds for patients, and removing it can sometimes tear away parts of the skin. She explained that the disease is caused by a genetic defect affecting the proteins responsible for holding the layers of the skin together.
«Patients endure daily suffering because of constant pain, wounds, and bleeding. Even eating solid food can cause injuries and wounds in the throat and stomach, forcing many patients to rely only on liquid foods».
She added that affected children often lose their nails quickly, while their teeth gradually deteriorate over time. To date, she noted, there is no definitive cure for the disease, only treatments that help relieve wounds and pain.
Berhou also stressed that the disease places a heavy financial burden on families due to the need for special non-stick dressings, ointments, vitamins, and other medical supplies. Most affected families, she explained, cannot afford these necessities, which in many cases leads to infected wounds and serious complications that can ultimately prove fatal.
