Patient Testimonial | Sir Ganga Ram Hospital

Описание: Miraculous Recovery of Young Boy with X-Linked Adrenal Leukodystrophy Following Haploidentical Transplant at Sir Ganga Ram Hospital

In a remarkable turn of events, a young boy named Amol, diagnosed with X-linked adrenal leukodystrophy (X-ALD), has shown significant improvement following a complicated haploidentical stem cell transplant performed by a team of doctors led by Dr Manas Kalra, a Pediatric Hematologist and oncologist at Sir Ganga Ram Hospital. X-ALD is a rare and devastating genetic disorder that leads to progressive neurological damage and, in many cases, death. Amol’s journey has not only been a testament to medical expertise but also a demonstration of resilience and hope.

At just 7 years old, Amol had already faced unimaginable tragedy; he lost his older sibling to the same ailment, while his uncle is currently battling the adult form of this devastating disease. The family was left devastated by the diagnosis, with overwhelming emotional and medical challenges to confront.

The genetics team led by Dr. Ratna Puri and Dr. Sunita Bijarnia, promptly referred Amol for the necessary transplant procedure to the Pediatric hematology, oncology and BMT team after accurately making this rare diagnosis. The transplant however, was fraught with difficulties. There was a lack of match Donor in the family. There was no matched donor in the donor registry either . Finally, they chose the father as a donor who is only a half HLA matched. Following the transplant, Amol experienced grade 4 graft-versus-host disease (GVHD), a serious and often life-threatening complication that can occur after such procedures.

"Throughout this challenging journey, we were faced with numerous obstacles. There were moments when we felt hope waning, yet Amol and his family demonstrated incredible strength and resilience," stated Dr. Manas Kalra. "As we worked tirelessly to manage his condition, our determination never faltered."

Despite the severe GVHD, and the subsequent development of refractory adenovirus infection with very high viral loads in his blood, Amol's condition improved with aggressive treatment. Remarkably, he has now crossed the critical milestone of 200 days post-transplant, with blood reports showing an impressive recovery and 100% donor cells. Neurological improvements have also been noted, and all complications have resolved. He will be under close follow-up for the next few years to see the status of blood production and neurological recovery.

The success of Amol’s treatment not only highlights the advancements in medical science but also underscores the importance of early diagnosis and intervention in genetic disorders.

Sir Ganga Ram Hospital is proud to share this inspiring success story and is committed to offer advanced care for blood, cancer and such rare genetic disorders that can be cured by stem cell transplant.

Note to Editors:
X-linked adrenal leukodystrophy (X-ALD) is a genetic condition characterized by the accumulation of very long-chain fatty acids in the body, leading to progressive damage to the nervous system and adrenal glands. Early identification and treatment play key roles in managing this condition.

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