Mohammed bin Rashid takes care of the treatment of an Iraqi girl with a rare genetic disease
His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice President, Prime Minister and Ruler of Dubai, has sponsored the treatment of an Iraqi girl with Spinal Muscular Atrophy, a rare genetic disease, while Al Jalila Children's Specialty Hospital confirmed that the child's treatment will take place within a few days.
The Iraqi girl Lavin Ibrahim Jabbar (19 months) suffers from spinal muscular atrophy disease (stage two), which is a genetic disease caused by a mutation in the gene of nerve cells.
She, the girl’s mother, appealed to His Highness Sheikh Mohammed Bin Rashid Al Maktoum, in a video that was circulated on social media, saying: “To His Highness Sheikh Mohammed bin Rashid Al Maktoum, the descendant of the honorable, in my name and the name of my daughter Lavigne, I send you an urgent distress call, my daughter has a disease It is very rare, and its treatment is not available in my country, Iraq. I tried a lot in Iraq and I was too tired, and treatment is available at Al Jalila Hospital in Dubai, but it is very expensive and exceeds my financial capabilities. One of the conditions for taking treatment is that the child is less than two years old.
The cost of treating the child is about 8 million dirhams ($ 2.1 million), which is the price of an innovative medicinal drug called (AVXS-101) Zolgensma, which has obtained the approval of the US Food and Drug Administration and the official health authorities in the UAE, and the drug is the most expensive medical drug in the world, which is an injection. one.
For his part, the Executive Director of Operations at Al Jalila Children's Specialty Hospital, Dr. Muhammad Al-Awadi, confirmed to "Emirates Today" that the process of treating the child Lavigne will begin within a few days, after obtaining the injection from the manufacturer, indicating that this operation is the third of its kind performed by the hospital. The inclusion of this type of rare treatments within the treatment programs that characterize Al Jalila Hospital at the regional level.
Al-Awadi continued, "We are pleased to announce the initiation of gene therapy for the child Lavin, the child No. 3, for whom we provide such an innovative treatment at Al Jalila Children's Specialty Hospital, in cooperation with our partners, and we are proud to be the first to provide treatment for such a genetic disease in the United Arab Emirates, as it promotes such These specialized and integrated services from the status of Al Jalila Children's Hospital as a reference and pioneering hospital in treating intractable medical conditions in the region under one roof, thanks to a multidisciplinary team of experts and specialists in the Neurology Center of Excellence, the Genomics Center, and the support departments in the hospital, and all of them work in a coordinated and integrated manner, to provide The necessary treatments for the child Lavigne, an end to her suffering, as we express our sincere thanks to His Highness Sheikh Mohammed bin Rashid Al Maktoum, "may God protect him", for this humanitarian gesture to support and adopt the treatment of the girl Lavigne, which has had the greatest impact on alleviating the girl and her family, especially in light of the current circumstances.
The father of the Iraqi girl Lavin Ibrahim Jabbar thanks His Highness Sheikh Mohammed bin Rashid for his generous initiative to treat his daughter, who suffers from a rare genetic disease # Emirates_Today pic.twitter.com/LqDf1MxCbk
- Emirates Today (@emaratalyoum) February 22, 2021
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