Maria Ullah, 6, who is suffering from Morquio syndrome, or MPS,  a rare genetics disorder, sits on her father Shahid's lap  in Rawalpindi, Pakistan, on Thursday, October. 20, 2016. The US embassy in Islamabad have twice refused her a visa to travel to the US where she has been offered life-changing surgery for free.  B.K Bangash / AP
Maria Ullah, 6, who is suffering from Morquio syndrome, or MPS, a rare genetics disorder, sits on her father Shahid's lap in Rawalpindi, Pakistan, on Thursday, October. 20, 2016. The US embassy in IShow more

Time running out for ailing Pakistan girl waiting for a US visa



COLOMBO // A Pakistani family awaiting a US visa for their ailing little girl is running out of time to get her to treatment that could alleviate her suffering.

Maria, 6, suffers from Morquio Syndrome, a rare genetic disease has left her frail body wracked with pain and stunted her growth. Soon she will be unable to walk because her vertebrae are compressing her spinal cord.

A US hospital has offered free surgery that could significantly improve Maria’s quality of her life, but the American Embassy in Islamabad has so far twice refused to give the family visas to travel to the United States, said the girl’s father, Shahid Ullah.

When he submitted a visa application again, he was told it would “take time”, he said. Frustrated and frightened, Mr Ullah has now turned to an American lawyer, Facebook and the media for help, starting a campaign he says could be his daughter’s last resort.

The surgery in the US has been scheduled for November 2.

“If we delay Maria’s surgery, there will be too many problems,” said Mr Ullah, who runs a small shop selling blankets in the town of Rawalpindi, near the capital of Islamabad. He said Maria has to be in the United States by Wednesday for pre-surgery tests.

“I don’t know what to do ... who should I contact,” he said. “Maria is in a lot of pain now ... she can no longer hold a pencil or a pen.”

Mr Ullah embarked on the quest to find help for Maria nearly four years ago, researching her condition and sending her blood and urine samples to laboratories in India and Germany.

Through the internet, he tracked down doctors with expertise in Maria’s condition, and families with children who suffer from the same condition in countries as far as Chile, Britain and America steered him to the Nemours/Alfred I DuPont Hospital for Children in Wilmington, Delaware. The families also rallied behind him and began crowd funding on Facebook.

The Delaware hospital first reduced the cost of the surgery from $100,000 (Dh367,000) to $82,000 but when it was clear Mr Ullah could not afford it, it said its Nemours Foundation would cover the full cost of the procedure.

Unlike in previous attempts to get a US visa, when Mr Ullah applied for the entire family and was told US authorities feared they would not return to Pakistan, this time he said he applied for a visa only for Maria, himself and his wife. He plans to leave his other two children, aged 7 and 2, behind with relatives during their stay in America, which is expected to last five months.

A US Embassy spokeswoman declined to comment on Maria’s case, citing privacy laws, but said she would look into the matter.

Melissa Harms, a California lawyer, offered to help pro bono when she heard of Maria’s troubles from a client whose child has the same disorder. “I was appalled,” she said.

Ms Harms said that housing for the family in the US had been arranged and that airline tickets had been donated.

“All of this will go to waste if we can’t get these visas approved this week,” she said.

* Associated Press

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