This year a young couple with 11 month old baby girl named as Prachi Bhanushali contacted us for help with Bone Marrow Transplantation.
The family originally belongs to the union territory of Daman. Prachi was suffering from Thalassemia Major. A few months after her birth, the family found this out after she regularly fell ill, had low hemoglobin and high fever starting from her age of just 6 months. Doctors in Daman has screened Prachi for thalassemia major and the genetic disorder was confirmed. A blood tests revealed her condition and doctors said that she must undergo blood transfusions every two weeks.
Thalassemia is an inherited blood disorder, in which the body produces an abnormal form of haemoglobin, which affects oxygen supply to the tissues. Doctors said that for a child to have this disease, both parents must be carriers. The prevalence of thalassemia is high among communities such as Kutchis, to which Prachi belongs too.
This was the very first time that the whole family came to know about the fact that the parents are carriers of thalassemia gene blood disorder. Soon after the diagnosis, she started receiving blood transfusion in Daman every 2 weeks. “Her haemoglobin level was much lower than it should have been. My wife and I realized that both of us were carriers of the disease,” said Girish Bhanushali, 37, Prachi's father who works at a ration shop in Daman earning monthly salary of Rs. 7000/-.
Thalassemia major is the condition treated with blood transfusions, which can lead to health complications. Repeated blood transfusions lead to iron build up in the heart, liver and other organs. This could lead to the early onset of diabetes and heart diseases as well.
During a regular visit to a hospital for blood transfusion, talking with the doctors from Daman, the family came to know about BONE MARROW TRANSPLANT ,which is the only cure to get over thalassemia. A bone-marrow transplant is the only cure for thalassemia. While a transplant is expensive, its cost equals that of ten years of blood transfusions.
The family contacted Sankalp India Foundation for HLA typing the test which would let them know if Prachi has a matched related donor for BMT. A few weeks later family is been told that the child can potentially be cured and the mother was found to be the fully matched donor.
Normally, siblings turn out to be a match. But, in Prachi's case, thanks to the marriages between the same community, her mother was a bone-marrow match, and could become the donor.
Sankalp India Foundation offered to get the BMT for Prachi with her donor being the mother Ms Chandrika at the Kokilaben Dhirubhai Ambani Hospital. Family was from poor background and from remote area in Daman. They could only contribute a tiny fraction of the cost of the transplant. Sankalp India Foundation took the responsibility to fund-raise the money needed for the transplantation through various philanthropic partner organisations. Fortunately, Prachi has minimal organ damage at such a tender age and was medically, ready for the transplant.
On 13th June 2016 Prachi was admitted for the transplantation . This couple is having two more children. Bravely, they kept both the children in Daman with the relatives to take care of and came to Mumbai. The transplantation was to take 2 months in the absence of any major complications. Transplant took place on 18th July 2016 and fortunately the recovery was normal. While the nurses took care of Prachi during her stay in the hospital, the mother was educated on how to take care of the child and prevent infections after discharge as well.
Prachi got discharged on 16th August 2016, 63 days after her admission. The family was required to visit the hospital on a weekly basis. Fourteen month old Prachi Bhanushali was the youngest to undergo transplantation at Kokilaben Dhirubhai Ambani Hospital. In the subsequent visits, Prachi is showing good progress.
Family is happy now that Prachi is doing well. Prachi's family has decided to make aware other members of the community about thalassemia. Now the family said that they are looking forward for Prachi's bright future ahead and will work hard for it.