We just want her to grow up normally: Parent of 16-month old suffering from blood disorder shares journey

The procedure was performed in January 2026. More than 40 days later, her blood count has stabilised. “She is recovering,” he said. “That is enough for us right now.”

Her story was one among several shared by patients and families at a media interaction with patients organised at Apollo Hospitals, Ahmedabad.

For an 11-year-old from Botad with the blood disorder transfusion-dependent thalassemia major, hospital visits once dictated his childhood. Every two to four weeks meant another transfusion.

“In thalassemia, unless a transplant is done at the correct time, children need lifelong transfusions. If undertaken early, cure rates can be 90 to 95 per cent.” said Lt Gen (Retd) Dr Velu Nair, haemato-oncologist at Apollo Hospitals, Ahmedabad.

In November 2024, the boy underwent a haploidentical stem cell transplant which is a type of transplant that uses healthy blood-forming cells from a donor who is a 50% genetic match. His father was the donor.

“My donor was my father,” he said, standing beside him. “Now I don’t need blood every month.”

The difference shows up in ordinary ways through uninterrupted school days, fewer hospital admissions.

Recovery, however, is not always linear.

A 20-year-old college student from Ahmedabad diagnosed with relapsed acute myeloid leukemia (AML) underwent a haploidentical transplant in January 2024. Months later, he developed graft-versus-host disease (GVHD), a complication in which donor cells attack the recipient’s body.

“The biggest challenge in a transplant is graft-versus-host disease,” Dr Nair said. “Earlier, complication rates in half-matched transplants were 40 to 50 per cent. Today they are around 15 to 20 per cent.”

Statistics came later. First came the ICU.

The student spent nearly three weeks on ventilator support after a severe infection. “He was on the ventilator for almost three weeks,” Dr Nair recalled. “But his parents never left.”

His mother, sitting beside her son, said, “We were there every day. We did not go home. We kept telling the doctor, ‘Don’t worry, he will recover.’ We believed he would.”

He is now in remission.

For a 53-year-old businessman from Ahmedabad, the challenge came even before the transplant. Tests revealed donor-specific antibodies, delaying the procedure for months.

“At that time, I was very tense about what to do,” he said. “For six months, they supported me. They reduced my antibodies. Then finally I could undergo a transplant.”

He underwent a haploidentical peripheral blood stem cell transplant in May 2022. Almost four years later, he returns for routine follow-ups. “Regular follow-ups are very important because you don’t know when the complications could shift or progress,” he said.

Advances in haploidentical transplantation, using half-matched donors, often parents or children, have widened access beyond the roughly 25 per cent of patients who have fully matched siblings.

“Haploidentical transplant results today are almost as good as matched sibling transplants,” Dr Nair said. “That has been a major advancement in the last 15 to 20 years.”

Some patients speak less about survival and more about continuity.

A 30-year-old professional from Ahmedabad underwent an autologous stem cell transplant, which uses the patient’s own stem cells to replace bone marrow, for classical Hodgkin’s lymphoma in August 2019. She has remained cancer-free for over six years.

A 73-year-old woman from Vadodara diagnosed with relapsed diffuse large B-cell lymphoma saw her cancer return within months of chemotherapy. In August 2025, she underwent CAR T-cell therapy. This is a form of cellular immunotherapy in which a patient’s own immune cells are engineered to target malignant cells.

“After six cycles, within two months it relapsed,” her son said. “We were searching everywhere. We were looking for the best option.”

“She got a CAR T infusion on August 21,” he added. “Within six months, she has recovered.”

“CAR T therapy represents a major step forward in precision immunotherapy,” Dr Nair said.

These individual recoveries unfold against a significant public health burden in the state. Quoting data tabled in the parliament Apollo Hospitals said over 77.34 lakh individuals in Gujarat have been screened for sickle cell disease, with 28,178 confirmed cases till July 2025. Nationally, more than 11,000 individuals have been identified with the blood disorder thalassemia major. India now has 167 transplant centres and has performed approximately 35,000 bone marrow transplants.

Cost remains a determining factor. Autologous transplants typically range between ₹8 to ₹12 lakh, while more complex procedures may cost between ₹15 to ₹30 lakh depending on complications.

State health support schemes have improved access, however, affordability and timely referral continue to shape the decisions families make.

For the father of the 16-month-old from Gandhinagar, the terminology of mutation, pancytopenia and transplant has narrowed to a single wish.

“We just want her to grow up normally,” he said.

(Nishant Bal is an intern at The Indian Express, Ahmedabad)