Is it too late? US finally grants visa to Pakistani girl, 6, for 'last resort' surgery in America - but only 24 hours ahead of time

  • Maria Shahid has MPS, a rare disease that creates build up in major organs
  • It means over time sufferers can develop heart disease, lose ability to walk
  • In her home country Pakistan, there is no surgery that can treat her disease
  • Surgeons in Delaware offered crucial spinal operation that could significantly improve her quality of life
  • The family only got their visa on Tuesday, needed to be there on Wednesday 
  • Family was overjoyed at the time but it is not clear if they managed to get a flight  

The US has issued a last minute-visa to an ailing six-year-old Pakistani girl desperately in need of surgery in the United States.

Maria Shahid has 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 hospital in Wilmington, Delaware offered to perform a surgery for free that could significantly improve Maria's quality of her life. She would need to be there for pre-surgery tests today.

Finally on Tuesday, after repeatedly refusing their applications, the embassy in Islamabad approved visas for Maria and her parents.

But with just 24 hours notice to get to Delaware, it is not clear whether the last-minute visa was too late. 

Desperate: Maria (center) is suffering from MPS, a rare genetics disorder. The six-year-old, pictured at home in Rawalpindi, Pakistan, has been offered surgery in the US to repair her spine to avoid potentially life-threatening complications that could arise from the disease

Desperate: Maria (center) is suffering from MPS, a rare genetics disorder. The six-year-old, pictured at home in Rawalpindi, Pakistan, has been offered surgery in the US to repair her spine to avoid potentially life-threatening complications that could arise from the disease

WHAT IS MARIA'S DISEASE? 

Morquio A is a rare genetic disease that targets the major organs.

It's technical name is mucopolysaccharidosis type IV - also referred to as MPS IV or simply MPS. 

Sufferers lack sufficient amounts of an enzyme called GALNS.

It means they cannot break down wasteful molecules in the body, which gather and clot in tissues, organs and bones.

This can lead to scores of debilitating and life-threatening health issues, including heart disease, blindness, hearing loss, and bone deformities.

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Shahid Ullah, the father of Maria, says that the family is 'so happy' at the news and thanked friends and supporters world over who helped them.

Ullah, a poor merchant who owns a shop selling blankets in Rawalpindi, near the capital of Islamabad, has campaigned for nearly four years seeking treatment for Maria.

She suffers from a genetic disorder known as Morquio Syndrome in which the vertebrae compress the spinal cord. 

Ullah says he and his wife will accompany Maria to a children's hospital in Wilmington, Delaware. 

Last week Maria's story made headlines as her frustrated and frightened father turned to an American lawyer, Facebook and the media for help.

The surgery had been scheduled for November 2 and Ullah was pleading with anyone who would listen that Maria's 'case was different'.

'If we delay Maria's surgery, there will be too many problems,' Ullah, who runs a small store selling blankets in the town of Rawalpindi, near the capital of Islamabad, said last week. 

Ullah said he embarked on the tortuous quest to find help for Maria nearly four years ago, researching her condition, sending her blood and urine samples to laboratories in India and Germany, connected with families of children with the same disorder, known as Morquio Syndrome.

Through the internet, he tracked down doctors with expertise in Maria's condition and families with children who suffer from the same disease from countries as far as Chile, Britain and America steered him to the Nemours/Alfred I DuPont Hospital for Children in Wilmington, Delaware.

'From all over the world parents with children with the same disease helped me, they were so kind,' he said. Families with children like Maria also rallied behind Ullah and began crowd funding on Facebook.

Another family of a child with MPS, based in Spain, created this GoFundMe page to help the family raise the $100,000 required for the surgery and to get to America.

The page's creator, Titti Smeby, wrote: 'I have lived with this diagnosis for almost one year now and during these months I have learned to know a lot of lovely people around the world in the same situation.

'Each and every one of them have their unique story, and each story is heartbreaking.

'But there is one story that have affected me a lot more than others. It's the story of the sweet Maria.'

She explained that Maria is the only MPS-infected child she has come across with so few options to improve her quality of life. 

Her page implored internet users to donate money.   

Soon Maria will be unable to walk because her vertebrae are compressing her spinal cord

Soon Maria will be unable to walk because her vertebrae are compressing her spinal cord

Frustrated and frightened, Ullah turned to an American lawyer, Facebook and the media for help, starting a campaign he said could be his daughter's last resort

Frustrated and frightened, Ullah turned to an American lawyer, Facebook and the media for help, starting a campaign he said could be his daughter's last resort

In previous attempts to get a U.S. visa, when Ullah applied for the entire family, he was told U.S. authorities feared they would not return to Pakistan.

But this time he only applied for a visa for Maria, himself and his wife.

He plans to leave his other two children, a seven-year-old daughter and a two-year-old boy, behind with relatives during their stay in America, which is expected to take five months.

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

U.S. Embassy spokeswoman Fleur S. Cowan declined to comment on Maria's case, citing privacy laws, but said she would look into the matter. 

In Washington, the State Departments said visa records are confidential under U.S. law and that it could not 'comment on the specifics of an individual visa case.'

Maria's father Ullah tracked down doctors with expertise in Maria's condition and families with children who suffer from the same disease from countries as far as Chile, Britain and America, who steered them to the Nemours/Alfred I DuPont Hospital for Children in Wilmington

Maria's father Ullah tracked down doctors with expertise in Maria's condition and families with children who suffer from the same disease from countries as far as Chile, Britain and America, who steered them to the Nemours/Alfred I DuPont Hospital for Children in Wilmington

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

'The hope is to do the surgery for the child . . . without any cost to the family,' said Chris Manning, who is with the Nemours Children's Health System public relations department, adding that the hospital has done multiple surgeries such as the one required for Maria.

He added that the hospital also sent documentation to the embassy in Pakistan to facilitate Ullah's visa application.

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. In an email to The Associated Press Harms said that housing for the family in the U.S. has been arranged and 'the airline tickets have been donated.'

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

 

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