A five-month old 4.4-kilogramme Emirati boy, stricken with a rare unpreventable recessive X disorder, and the youngest recipient of a donated liver in the UAE, courtesy of his 37-year-old paternal aunt, shall now be on lifelong monitoring and treatment.
Fifth child Ahmed Al Yassi is recuperating at the Burjeel Medical City-Paediatric Intensive Care Unit (BMC-PICU) since his
April 4, 2025 12-hour ultra-delicate transplantation. His giant strength, and his family’s and the medical team’s indefatigability, serve as an inspiring testimony for the August 13 “World Organ Donation Day."
The WODD 2025 theme is “Answering the Call,” for the continuous correct information dissemination on the necessity to grant one’s organ/s to save lives.
In the UAE, since 2017, is the Ministry of Health and Prevention-spearheaded National Programme for Donation and Transplantation of Human Organs and Tissues-Hayat Programme. According to a press statement, quoting undersecretary, Dr. Mohammed Salim Al Olama, it has been boosted with advanced digital solutions and artificial intelligence that guarantees transparency and efficiency at every stage of organ donation and transplantation process. Its website as of 4:30 p.m. of August 13 had “37,298 registered donors.”
From a press statement quoting Department of Health-Abu Dhabi undersecretary Dr. Noura Khamis Al Ghaithi, 1,380 transplantations, through the Hayat Programme, were carried out from 2017 to 2024. The 2024 were at 290: seven heart, 142 kidney, 117 liver, 22 lung, and two pancreas.
Over at BMC, elated was Ahmed’s father Yahya: “My baby’s recovery is nothing short of a miracle. We were once a family living in fear of losing another child due to a liver problem. I hope our story inspires others to come forward, to learn more, and consider becoming donors. You never know whose life might change.”
Abdominal Transplant and Hepato-Pancreatic Biliary surgeon Dr. Johns Shaji Mathew confirmed that Ahmed shall receive “lifetime monitoring and therapy that includes immunosuppressive medications to prevent organ rejection, while the transplant on Ahmed has resolved the liver-related complications.”
“Ahmed will be regularly supervised by liver and genetics specialists for ongoing evaluation,” added Mathew, among the multi-disciplinary team members, led by Burjeel Abdominal Multi-Organ Transplant Programme-Transplant Surgery director Dr. Gourab Sen.
The other on-case Transplant Team were Anaesthesia Division chairperson Dr. Ramamurthy Baskaran and specialists Dr. George Jacob and Dr. Anshu S., and Paediatric Intensive Care Unit (PICU) consultant Dr. Kesava Ramakrishnan. Their advice: “urgent transplantation.”
Ahmed’s health debilitated due to the rise of his liver enzymes immediately birth. His diagnostics demonstrated that he is afflicted with ATP6AP1-Congenital Disorder of Glycosylation (ATP6AP1-CDG).
Instrumental were the “family’s conviction” and the bravery-cum-volunteerism of mother-of-five Haifaa, Yahya’s sister-in-law, who passed all compatibility tests. She and Ahmed are A+ blood type.
Mathew said: “The family’s conviction came from the fact that without a transplant, Ahmed’s survival chances were extremely low. They already experienced the loss of an older son to similar complications, which made them determined not to lose another.”
“The doctors gave us new hope. My sister-in-law gave us life again,” said Yahya.
The USA-headquartered public-private-supported Frontiers in Congenital Disorders of Glycosylation (FCDG) portal notes that ATP6AP1-CDG generally affects males at one every one million. Ahmed has so far become the 31st survivor. There are 30 in other countries. The oldest patient is age 67.
ATP6AP1-CDG “age onset” range from the mother’s pregnancy to age two, notes the Orphanet Knowledge on Rare Diseases and Orphan Drugs.
From the FCDG, patients “may have variable degree of liver dysfunction and immunodeficiency with recurrent infections.” Impaired-ness include developmental delays; abnormal body movement; gastrointestinal, urinary and genital problems; congenital heart defects and blood syndromes. So far, the solution is “liver transplantation which has been successful in patients with severe liver failure.”
Mathew said decreased transmission would only be via “genetic screening and pre-marital genetic counselling to identify carriers and inform reproductive decisions for families with a known history.”
Ahmed’s family history has “his grandfather passed on in 2010 due to a liver disease.”
From the BMC Transplant Team that encourages a well-informed community on organ donation and transplantation: “Ahmed’s survival underscores the transformative power of organ donation and the advanced capabilities we now have in the UAE to perform complex, high-stakes surgeries for even the tiniest patients. Liver transplantation is not just surgical procedure; it is a second chance at life for those with no other options.”