Dubai Ruler pays for Iraqi girl's medical treatment after mother's plea goes viral
18-month-old girl suffers from spinal muscle atrophy and her family is unable to pay for life-saving treatment
Sheikh Mohammed bin Rashid, Vice President and Ruler of Dubai, will cover Dh8 million ($2.18m) in medical treatment for an 18-month girl with a degenerative and debilitating disease.
Sheikh Mohammed pledged the aid to the Iraqi girl, named Laveen, whose mother had filmed herself making an emotional plea for help that was widely shared online.
In the video, the child's mother, Massar Mundhar, said doctors had diagnosed spinal muscle atrophy – a genetic disorder that weakens and wastes muscles away.
Laveen had Type 2 spinal muscle atrophy diagnosed.
Ms Mundhar, who is currently in Dubai, said doctors have given Laveen only months to live if she cannot continue her expensive treatment – new drugs that have shown promising improvements in quality of life and life expectancy.
“The treatment is available in Dubai at Al Jalila Children's Hospital, but we can't afford it,” Ms Mundhar said.
Doctors told her the treatment was most effective before a child turns two, giving Laveen six more months to get help.
“I appeal to you with all humanity to look at my child with the eyes of mercy and to agree to take her under your kind care so she receives treatment in your kind and giving country," Ms Mundhar said in the video.
"My daughter just has a few months remaining, If she doesn’t receive treatment. She will turn into a doll and become bedridden.”
She said the atrophy could reach Laveen's lungs and kill her.
“Your doors are open to humanity and I am a mother who is racing against time for her child. I have tried and continue trying and I am now in your land, a guest in your land with my daughter.
"We’ve reached a day where a probe has reached Mars, and that was a sign of hope to me. God willing, my call will reach you.”
Her video was widely shared on social media, with people tagging Sheikh Mohammed in the hope that he would see the appeal.
On Tuesday, Laveen's father, Ibrahim Al Kutayshi, said he was overjoyed after receiving the call that delivered the good news
“This was the call that would save my daughter’s life. You don’t know how that feels,” the 35-year-old father of two told The National.
“Our lives were returned to us ... You can imagine the feelings of a mother and father being told that their daughter will have a chance to survive.”
The family typically live in Iraq but Mr Al Kutayshi, who works for a local marine shipping company, frequently travels to the UAE.
He arrived in Dubai with his wife and daughters on February 2 with the intention of seeing a doctor at Al Jalila Children's Speciality Hospital.
When they were told how much the treatment would cost, they took a chance and made the video.
Mr Al Kutayshi said he was not surprised that the Dubai Ruler agreed to help.
"Sheikh Mohammed is known for his humanitarian work and this is proof. The response was immediate.
“All we hope is to see [Laveen] grow up with her sister [Lareen, 6] and for them to become doctors [to help others]."
Dr Haitham Al Bashir, head of neuroscience at the hospital, said Laveen's disease could never be cured "but it is manageable just like diabetes and hypertension and other diseases.”
He said the treatment, called Zolgensma, is known as the most expensive drug in the world. It acts as a replacement to the missing gene, which causes spinal muscle atrophy.
The one-time-only gene therapy treatment costs $2.1 million and is administered by an hour-long infusion.
Laveen, who can no longer sit independently, is expected to take the injection sometime next week.
“Without treatment, [the disease] is a life threatening. There are no current studies that discuss life expectancy after treatment. This is a drug that has been introduced a year ago so we won’t know yet. We obviously expect that if you correct the genetic defect, you will have a normal life expectancy,” said Dr Al Bashir.
To date, only two children have received the treatment with four others scheduled for next week. The children who were treated were from Egypt and Lebanon and those on the waiting list are Turkish, Saudi Arabian, Iraqi and Syrian.
Updated: February 23, 2021 04:21 PM