‘A father to all children’: Sheikh Mohammed funds life-saving treatment for Syrian girl

Yaqeen Kankar has spinal muscular atrophy and specialist treatment is as much as Dh7 million

Yaqeen has spinal muscle atrophy, a genetic disorder that weakens and wastes muscles, but she has now received a lifeline. Photo: Ibrahim Kankar

Sheikh Mohammed bin Rashid, Vice President and Ruler of Dubai, is to cover Dh7 million ($1.9 million) in medical treatment for a young girl with spinal muscular atrophy.

The announcement came after Yaqeen Kankar’s uncle posted a video on social media appealing for help to save her life.

In the video, he said the Syrian girl, who will soon turn two, suffers from a degenerative and debilitating disease. Doctors diagnosed spinal muscle atrophy (SMA) – a genetic disorder that weakens and wastes muscles - and her uncle asked for help with the cost of her treatment, which is available in only a few centres globally, including Al Jalila Hospital in Dubai.

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Yaqeen’s father, Ibrahim Kankar, 27, told The National of his surprise when the office of Sheikh Mohammed informed him that the Ruler of Dubai would cover the costs in full.

“Sheikh Mohammed bin Rashid is the father of all children. This action is not strange from the UAE and its rulers,” Mr Kankar said.

“I couldn’t believe that three days after posting the video, with the help of the UAE’s Charity International Organisation, my daughter will survive and live a normal childhood. You don't know how that feels.”

Yaqeen's life was on the line before the generous donation from Sheikh Mohammed. Photo: Ibrahim Kankar

Critical need

Mr Kankar, who lives in Sharjah, said doctors gave Yaqeen only months to live if she could not undergo the expensive treatment.

“Her health condition is very critical and she needs urgent treatment which we can’t afford,” he added. “Me and her mother are thrilled and full of joy knowing she will now get it. These unforgotten moments will last long in our memory.”

Yaqeen is Mr Kankar's only child. “She has symptoms that we couldn’t understand like not being able to interact with her surroundings. After many failed attempts to diagnose her disease, we came to the UAE where we found care and mercy,” he said.

Dr Khaled Abdul Wahab Al Khaja, secretary general of the International Charity Organisation, praised the generous gesture. “Sheikh Mohammed represents a model for unlimited humanitarian work,” Mr Al Khaja said.

The organisation sponsored the girl’s case by posting a plea on their website and social media.

“Her family has a poor income and it was impossible for them to pay the cost of treatment,” Mr Al Khaja added. "Sheikh Mohammed is the supporter for any person in need in the UAE."

Looking to the future

Dubai Health's Al Jalila Children Hospital welcomed Yaqeen on Thursday and examined her with the necessary tests.

"The medical team has commenced essential diagnostic procedures, including genetic and antibody testing," a statement read. "All necessary evaluations are under way in preparation for administering gene therapy. Throughout this process, Yaqeen’s condition will be closely monitored and managed to maintain the highest standards of paediatric care."

SMA is a condition that affects the motor neurons (nerve cells that transmit impulses to the muscles) and weakens the limbs. It makes walking difficult or impossible and creates problems with swallowing, as well as breathing.

The treatment offered by Al Jalila Children's Hospital, called Zolgensma, is given once and is a form of gene therapy.

It was approved by the US Food and Drug Administration four years ago and has been described as the most expensive drug in the world.