For the treatment they imported five vials, the cost of EACH vial was US$ 20,000 (Approx. INR 13.5 lakhs). But the toughest part was to take care of the vials during transportation. The temperature cycle, cold storage, and the chain and all has to be taken care of, and that itself was a challenge for them.
His lever, bone marrow and spleen was affected, and this is where the RBC (Red Blood Corpuscles) are created. So if it stops generating new RBC, then it becomes a threat to life.
Ayan Sayyad hails from Nanded and had Griscelli syndrome since birth. He developed hemophagocytic lymphohistiocytosis because of Griscelli syndrome, which lymphohistiocytosis is a life-threatening disorder of excessive immune activation. Ayan was first presented to Bai Jerbai Wadia hospital with hemophagocytic lymphohistiocytosis when he was two years old. His overactive immune system was affecting the liver and bone marrow, so he was treated with steroids and chemotherapy to control the overactive immune system. He responded well to the treatment and was advised to undergo a bone marrow transplant in another centre since the bone marrow transplant facility was not available at Wadia hospital.
Ayan’s parents chose not to go for bone marrow transplant and continued to follow up with Wadia hospital. When he was four years old, he presented with recurrence of hemophagocytic lymphohistiocytosis affecting the liver, bone marrow and brain. Immunology doctors in Wadia hospital started him on steroids and chemotherapy and referred him to the newly opened bone marrow transplant facility at Wadia hospital. Ayan has two siblings. Unfortunately, both the siblings did not have the same tissue type as Ayan. Therefore, the bone marrow transplant team performed a donor search and found a completely matched volunteer unrelated donor through DATRI (Stem cell transplant registry).
Doctor Prashant Hiwarkar (BMT Physician) says, “Ayan’s transplant was particularly challenging because Ayan continued to have active disease involving the liver and bone marrow, despite treatment with steroids and chemotherapy. We treated Ayan with an imported drug called Alemtuzumab to control the overactive immune system. Ayan had a good response to Alemtuzumab. This improved the chance of success of the bone marrow transplant procedure. Ayan is now three weeks post-transplant. Bone marrow graft is working well, and all his affected organs such as liver, bone marrow, and brain are functioning normally. He is scheduled for discharge at the end of this week. It is satisfying to perform a bone marrow transplant procedure exactly the way he performs in the UK”.
In this procedure, the most important factor is the planning, which takes a lot of time, like they have to counsel the parents, explain them everything, because in such cases there are chances of losing the life of the patient, due to many reasons, for example, an infection. So it is very important to take the parents into confidence and make them ready before they start the procedure of the transplant. Then they have to start searching for the donor, then again they have to convince the donor.
Dr. Minnie Bodhanwala, CEO, Wadia hospitals, says, ”It is the beginning of new era for BJ Wadia Children’s hospital. We are pleased to offer complex procedures such as bone marrow transplant to patients irrespective of their economic status. 500 Cases in Maharashtra requires BMT, there are very few centres offering such facilities, and we are delighted that we will be able to treat such cases at affordable costs. The boy will be discharged in a couple of days. He will be called after a fortnight, and then once in a month.”
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Usually, they follow the patience for the long term, but again if everything is ok for the first six months, then generally there are no issues in the future in that area.