Life Video

By Taniya Dutta

Four Pakistani siblings are awaiting a miracle to cure their extremely rare skin disorder that has eaten one of their nose and partially blinded another. 

Javid, 26, Maria, 19, Sobia, 17 and Aaliza, 9—all suffer from the Xeroderma Pigmentosum, a rare genetic disorder characterized by extreme sensitivity to ultraviolet (UV) sunrays.

MANDATORY BYLINE TO HAMID ASHRAF/ CATERS NEW: The condition has left nine-year-old Aaliza partially blinded and blood oozes out of her eyes

The siblings from the small village of Yousuf Zia Main in Pakistan’s Sindh Province have been shunned by the villagers because of they think their condition is communicable. 

Their parents-father Hussain Bux Sindhi, 48, a taxi driver and mother Maheen Naseem, 40, have exhausted all their savings in the treatment of their children but nothing could cure them.

Hussain said: “I have taken them to different hospitals in Pakistan from last 26 years but doctors say there is no cure for this disease.

“I have spent lakhs of rupees on the treatment of my children and even had to sell my house. I live in a rented accommodation now,” 

MANDATORY BYLINE TO HAMID ASHRAF/ CATERS NEW: Sobia Hussain, 19, has her nose deformed due to the rare skin disorder

“Doctors prescribe  sunscreen lotions, gels and body supplements for temporary relief but ultimately they don’t work. They just said to keep my children away from sunlight.”

Sindhi, who earns up to 9000 Pakistani rupees or £57 per month, says because of their children’s condition they are treated as “outcasts in the village”.

“They maintain their distance from them.”

“Some villagers often pass comments which hurt my children.”

The disease that affected all of their kids after they turned two years old has even eaten away Sobia’s nose and have caused serious problems in their youngest daughter Aaliza’s eyes. 

“Blood is oozing out of her eyes affecting her eyesight.

MANDATORY BYLINE TO HAMID ASHRAF/ CATERS NEWS: The condition has blinded Aaliza =

“She is in a terrible pain and often stays indoors,” he says.

Sindhi who was assured help by the government seven months ago without any follow-up said he was forced to take to social media to seek monetary assistance for the operation of Aaliza in Pakistan’s port city Karachi.

“The government only provided me some eatables and a few bags of rice,” he says.

Last Saturday, some well-wishers helped him upload videos and pictures on social media sites, showing the condition of his children.

MANDATORY BYLINE TO HAMID ASHRAF/ CATERS NEWS: Siblings pose for a picture together at their residence in a small village in Sanghar district of Sindh Province in Pakistan

By Tuesday afternoon, people had donated nearly 1,50,000 Pakistani rupees (£960) in his bank account.

Hussain is delighted with the response and hopes that the money could help getting treatment for Aaliza’s condition. 

“There has been tremendous response. I have received dozens of messages and calls from people across the country expressing their solidarity. I hope the money will help getting treatment for my daughter’s eyes.”