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