Cordlife Save the Sibling Project Saves Akshoy

Akshoy is a 7 year old boy from Kolkata, India, who was very sick with a severe form of Thalassemia. He is healthy today, thanks to an initiative called Save The Sibling that brings together multiple doctors and specialty centers.

Akshoy was diagnosed with Homozygous Beta-zero Thalassaemia, a severe inherited haemoglobinopathy. The government of India reports that 10 to 15 thousand babies are born each year in India with “Thalassemia Major”, the severe form of the disease that requires medical intervention. Akshoy was chronically anemic and dependent on blood transfusions. Not only is this a hard life for a little boy, but over time multiple blood transfusions lead to an overload of iron in the body, which damages the organs. The cure for Thalassemia Major is to replace the patient’s inherited blood system by performing a stem cell transplant.

Seeking a cure, Akshoy’s parents consulted Dr. Joydeep Chakrabartty, Head of Haemato-Oncology and Bone Marrow Transplantation at HCG EKO Cancer Centre, Kolkata. This was when they learned about the Save The Sibling program. The goal of the Save The Sibling program is to make sure that the parents can conceive a “Savior Sibling” that is both a genetic match for a transplant as well as not a carrier of the genetic disease.

Save The Sibling is a collaboration between the fertility center Renew Healthcare, the cord blood bank Cordlife, and the specialty hospital HCG Cancer Centre.

We have featured stories of several children who received a cord blood transplant from a sibling to cure their Thalassemia. But not every sibling is a close enough genetic match to be a transplant donor. In one case, the family had to wait for the 7^th child  before they could transplant their oldest son. Save The Sibling speeds up that process and guarantees a donor on the first try by using Preimplantation Genetic Diagnosis (PGD) and Preimplantation Genetic Matching (PGM) during in-vitro fertilization (IVF) to conceive the perfect donor for the older sibling. Upon birth, the baby’s cord blood is saved at Cordlife cord blood bank. When the family is ready, the stem cell transplant is performed at the HCG Cancer Centre.

Cordlife India offers enrollment in the Save the Sibling program to eligible families with no registration or participation fee. Eligible families sign a formal contract outlining the terms of assistance.

Four distinct components of Save The Sibling:

(1) Conception of an unaffected, HLA-matched baby:
Dr. Rajeev Agarwal, Renew Healthcare, Kolkata, West Bengal, India.

(2) Cord Blood Stem Cells: collection, transportation, processing, testing, cryopreservation, and release:
Cordlife Sciences India Pvt. Ltd., Kolkata, West Bengal, India.

(3) Stem Cell Transplantation:
Under the direction of Dr. Joydeep Chakrabartty at HCG EKO Cancer Centre, Newtown, Kolkata, West Bengal, India.

(4) Financial assistance and goodwill contribution:
Cordlife Sciences India Pvt. Ltd., provides financial support up to INR 20 lakhs to cover hospital-based transplantation-related expenses, along with an additional goodwill contribution of INR 5 lakhs to support recovery-related costs.

Akshoy is believed to be the first documented case in India of a child that received a successful cord blood transplant from a sibling donor conceived through PGD and PGM. In Akshoy’s case, the sibling stem cells were supplemented with haploidentical (half-matched) stem cells from his mother’s blood. This type of haplo-cord transplant enables the patient to recover faster from chemotherapy while waiting for the cord blood stem cells to completely engraft. Akshoy’s immune system recovered in 15 days, and post-transplant his unsupported haemoglobin level is 10.0 g/dL, which is within the normal range for his age.

Akshoy’s father gave this testimonial: “Through the Save the Sibling program, our journey has been a remarkable blend of science, compassion, and faith…. This was made possible through the generous financial and scientific support of Cordlife, in collaboration with Renew Healthcare and HCG Cancer Centre. This milestone stands as living proof that when science is guided by compassion and love, miracles truly happen. Moreover, this breakthrough has opened a new door of hope for thalassemia patients, paving the way to save countless young lives in the future.”