The parents travelled with hope that experts in Dubai would be able to save their daughter’s life.
Desperate to save the life of her one-year-old daughter who is suffering from a rare disease, an Iraqi mother made an emotional plea on social media and tagged the Ruler of Dubai. She had never imagined he would respond — but he did, with a promise of taking care of treatment costs worth Dh8 million.
Iraqi nationals Ibrahim Jabbar Mohammed and his wife Massar Mundhar flew into Dubai on February 9 with baby Laveen Ibrahim Jabbar Al Kutayshi, who suffers from a rare genetic disease called spinal muscular atrophy (SMA), a fatal condition. They travelled with hopes that experts in Dubai will be able to save their daughter’s life.
When they learnt that the treatment was expected to cost Dh8 million, Massar broke down and, out of desperation, made an emotional video for His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice-President and Prime Minister of the UAE and Ruler of Dubai.
In the video she can be seen crying with little Laveen in her arms as she pleaded: “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 two years of age.”
Little Laveen has only a few months left before she turns two, 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 posted about 10 days ago and, on Monday, the family received the miracle 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 cost of the treatment.
In the next few days, the team of Al Jalila Hospital will be starting the treatment. It is the first and only UAE hospital that will carry out gene therapy for spinal muscular atrophy. Considered the world’s most expensive treatment, gene therapy — which includes a one-time infusion of the drug Zolgensma (AVXS-101) — will be administered to baby Laveen at the hospital, once all medical and genetic tests are completed.
Choking with emotion, Laveen’s father Ibrahim told Khaleej Times that he and his family were deeply touched.
“We are so grateful to God and the Ruler of Dubai that he gave us our life back. We were scared 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 would never be able to afford by ourselves. Our heartfelt thanks to the Ruler and all the compassionate people of this country who helped us through this.”
The couple also has a six-year-old daughter who is accompanying them in Dubai. While Ibrahim said he would come to Dubai once a year for work, it was his family’s first time to visit the city.