Two Saudi siblings have made an impassioned plea for help to treat a rare skin disease that they have been suffering from since birth.

Thirty-four-year-old Sharifa Saleh Atiya and her brother Salman hope that someone could assist with treatment. They have Epidermolysis Bullosa (EB), an inherited connective tissue disease that causes blisters on the skin, resulting in friction and skin fragility. Its severity ranges from mild to lethal, according to Wikipedia.

The condition was brought to public attention in 2004 in the United Kingdom through a documentary, The Boy Whose Skin Fell Off, chronicling the life and death of Jonny Kennedy.

"Butterfly Children" is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly’s wings. The problem worsens during summer when a sufferer can only wear cotton.

Sharifa and her brother live in Al-Hujra village near Al-Baha where local hospitals have only given them painkillers but never provided a permanent cure. They are desperately seeking help to end their suffering.

Sharifa and Salman took tests and gave skin samples at various hospitals in the Kingdom. “We went to King Fahad Hospital in Jeddah, one in Al-Baha and a specialized hospital in Riyadh but nothing was accomplished,” Sharifa told Arab News.

“My life is painful,” she said. “I even have injuries in the esophagus which makes it hard for me to eat food unless I mash it first.”

They appealed for assistance so that they can live in an air-conditioned house. “The high temperature only worsens our problem,” Sharifa said. The pair’s poor finances also make it difficult to travel to Makkah so that they can wash their skin with sacred Zamzam water. They said that they heard there may be treatment in the US and China, and appealed to the community to help them travel to one of these countries.