An Iraqi mother posted an emotional video on social media and tagged the Ruler of Dubai. She plea to save the life of her 1 year-old daughter who is suffering from a rare disease. That Video reached infront of His Highness and he promise taking care of treatment costs worth Dh8 million.
Iraqi residents brahim Jabbar Mohammed and his wife Massar Mundhar flew into Dubai on February 9 with baby Laveen Ibrahim. Who suffers from a rare genetic disease called spinal muscular atrophy (SMA), a fatal condition. They came Dubai with the hope that experts in Dubai will be able to save their daughter’s life.
When they learnt that the treatment would cost Dh8 million, they lost their hope and made an emotional video for His Highness Sheikh Mohammed bin Rashid Al Maktoum.
In the video, the mother is crying with little Laveen in her arms as she plea: “To the honourable, His Highness Sheikh Mohammed bin Rashid Al Maktoum, my child and I urgently seek your generosity. My daughter has a very rare disease that has incapacitated her. Since our country does not have the required expertise and treatment. We were told to take her to Dubai’s Al Jalila Hospital. However, we cannot afford the cost of her treatment and time is running out as this disease can be best treated if the child is under 2 years of age.”
Little Laveen has only a few months left before she turns 2, she said. “I seek your help in giving her a new lease of life…I beg you to consider her the youngest guest in your country and show the compassion and mercy the UAE is known for.
The video was 9 days old and, on Monday, the family received the news they prayed hard for. Their doctor at Al Jalila Children’s Specialty Hospital said Sheikh Mohammed had seen the video and said he would extend financial help and take care of the expense of the treatment.
After few days, the team of Al Jalila Hospital will be starting the treatment. It is the 1st and only UAE hospital that will carry out gene therapy for spinal muscular atrophy. It is the world’s most expensive treatment, gene therapy. Which includes a 1 time infusion of the drug Zolgensma (AVXS-101) will be administer to baby at the hospital. After the completion of all medical and genetic tests.
Filled with emotions, her father said,
“We are so grateful to God and the Ruler of Dubai that he gave us our life back. We were scare that we would lose our daughter forever. It was painful to see my daughter unable to move like normal kids. Her hands and legs were losing strength and we were losing hope. But thanks to His Highness, our baby is receiving this life-saving treatment, which we never be able to afford. Our heartfelt thanks to the Ruler and all the compassionate people of this country who helped us through this.”