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Updated 25 May 2018

Siblings with rare disorder hope for a miracle cure

Four Pakistani siblings suffering from an extremely rare skin disorder that’s destroyed the nose of one and partially blinded another are living in hope of a miraculous cure.

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Four Pakistani siblings suffering from an extremely rare skin disorder that’s destroyed the nose of one and partially blinded another are living in hope of a miraculous cure.

Javid (26), Maria (19), Sobia (17) and Aaliza (9) Sindhi all suffer from xeroderma pigmentosum, a rare genetic disorder characterised by extreme sensitivity to ultraviolet (UV) sunrays.

The siblings, from the small village of Yousuf Zia Main in Pakistan’s Sindh Province, have been shunned by locals because who believe their condition is communicable.

Their parents – father Hussain Bux Sindhi (48), a taxi driver, and mother Maheen Naseem (40) – have exhausted their savings seeking treatment for their children. But so far no cure could be found.

“I’ve taken them to different hospitals in Pakistan but doctors say there’s no cure for this disease,” Hussain says.

“I’ve spent lots of money on the treatment of my children and even had to sell my house. I live in a rented accommodation now.

“Doctors prescribe sunscreen lotions, gels and body supplements for temporary relief but ultimately they don’t work.”

Hussain says because of the children’s condition the family are treated as “outcasts in the village”.

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

The disease, which started affecting the siblings from the age of two, has eaten away Sobia’s nose and caused serious problems in youngest daughter Aaliza’s eyes.

“Blood is oozing out of her eyes, affecting her eyesight,” Hussain says. “She’s in terrible pain and often stays indoors.”

Last week a few well-wishers helped him upload videos and pictures showing his kids’ condition on social media.

By Tuesday afternoon Hussain had received donations of nearly 150 000 Pakistani rupees (about R16 000) in his bank account.

“There’s been tremendous response,” he says. “I’ve received dozens of messages and calls from people across the country expressing their solidarity.”

Hussain is delighted with the response and hopes the money will help get treatment for Aaliza’s condition.

 
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