The silent torment of Iran’s “butterfly children”

NCRI - A new photo report from Iran provides a shocking glimpse into the extraordinary suffering that some impoverished children south of Kerman, south-east Iran, are facing.

These children are suffering from Epidermolysis Bullosa (EB), known commonly as butterfly disease, and their suffering is ever greater as a result of lack of proper healthcare provided to them by the mullahs’ regime.

The photos have been published in a number of state-run websites, including the Fars news agency, since April 5.

These children living in an impoverished part of Iran experience untold-but-constantly-painful torment during their short lives.

Zeinab Afzalpour is one of these children. She is ten years old. She is struggling with her blisters continuously. Zeinab is a resident of Haidarabad Roudbar, a village south of Kerman. Her little hands are covered with blisters that have been associated with her for a long time. The blisters never let her nails grow, and her fingers have become fully attached to each other, creating a tragic situation.

Zeinban’s teacher says: “From the day she was born, the wounds appeared on her body gradually and soon after that all of her body was covered with sores and blisters. We took her to Kahnoj and Jiroft hospitals for treatment. The initial diagnosis was measles and then chickenpox, however, when the treatment procedures were not effective, it was declared as a congenital disease.”

“She is the cleverest student in the class. Although she can barely hold the pencil in her hand, her notebooks are always clean with beautiful handwriting. She is incredibly bright in math, and she has very good learning competence”.

“However, because of this pain, she is isolated. In the hallways and the class, she tries to avoid any contact with other children because even the smallest contact causes her wounds to split giving her much pain.”

Zeinab’s grandmother is in her forties. She says: “I am Masoumeh Dastori. I have been raising Zeinab from when she was just two weeks old. Apart from this child, I am responsible for raising my two children whose father has died. Zeinab had blisters all over her body from when she was born. These wounds are similar to welts, they fester and start to bleed, and there has been no treatment for that so far. There are blisters in every point of her body, and she has developed tissues between her fingers and between her toes making them stuck together in such a painful manner; this makes her impatient. At night, she cries of pain. I make her sleep with sleeping syrup, but she can’t sleep easily for a few hours and when she wakes up in the morning her clothes stick to her body, and this stickiness of clothes to her body is one of the major problems that this child has.”

Zeinab, Yalda, Hamideh, Zahra, and Danial are some of the children with this disease in the south of Roudbar. Despite limited reporting of these children’s situation by state media since 2013, so far no action has been taken by the regime to remedy their situation or lessen their pain.

Hossein Abedini of the Foreign Affairs Committee of the National Council of Resistance of Iran (NCRI) said: “The mullahs’ regime pours the Iranian nation’s wealth into warmongering, ballistic missile production and into the coffers of its corrupt officials. The economy is mainly in the hands of the Revolutionary Guards (IRGC) and the state resources are being used for the regime’s transgressions in the Middle East, especially in Syria and Yemen. As the NCRI had previously warned, the Iranian people are not benefiting from the sanctions relief following the nuclear deal. The regime is using the new funds for its terrorist activities abroad including for example its ramping up of forces for a new offensive in Aleppo in Syria in support of the Assad regime. Yet at the same time the Iranian people have become poorer. Some officials of the regime have acknowledged that around 80 percent of Iranian people are living below the poverty line. Poor people are suffering hardships including medical crises, but the regime has done nothing to improve the people’s welfare or see to their medical needs.”