We simply need her to develop up usually: Father or mother of 16-month outdated affected by blood dysfunction shares journey | Ahmedabad Information
When docs informed the dad and mom of a 16-month-old from Gandhinagar that their daughter would wish a bone marrow transplant, there was little debate at house.
“We had been informed there was no different choice. Genetic assessments in December had confirmed an inherited bone marrow failure syndrome brought on by a mutation within the DNAJC21 gene. They stated a transplant is the one treatment. We had been scared… However we agreed instantly. What else may we do?”, her father stated at a media interplay on Thursday.
By then, she had already developed pancytopenia, a situation which meant her physique was unable to provide sufficient blood cells to struggle infections. “She would fall sick time and again,” he stated. “We had been simply praying that the transplant would work.”
The process was carried out in January 2026. Greater than 40 days later, her blood rely has stabilised. “She is recovering,” he stated. “That’s sufficient for us proper now.”
Her story was one amongst a number of shared by sufferers and households at a media interplay with sufferers organised at Apollo Hospitals, Ahmedabad.
For an 11-year-old from Botad with the blood dysfunction transfusion-dependent thalassemia main, hospital visits as soon as dictated his childhood. Each two to 4 weeks meant one other transfusion.
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“In thalassemia, except a transplant is completed on the appropriate time, kids want lifelong transfusions. If undertaken early, treatment charges might be 90 to 95 per cent.” stated 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 sort of transplant that makes use of wholesome blood-forming cells from a donor who’s a 50% genetic match. His father was the donor.
“My donor was my father,” he stated, standing beside him. “Now I don’t want blood each month.”
The distinction reveals up in extraordinary methods by way of uninterrupted college days, fewer hospital admissions.
Restoration, nevertheless, just isn’t at all times linear.
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A 20-year-old faculty scholar from Ahmedabad identified with relapsed acute myeloid leukemia (AML) underwent a haploidentical transplant in January 2024. Months later, he developed graft-versus-host illness (GVHD), a complication during which donor cells assault the recipient’s physique.
“The most important problem in a transplant is graft-versus-host illness,” Dr Nair stated. “Earlier, complication charges in half-matched transplants had been 40 to 50 per cent. Immediately they’re round 15 to twenty per cent.”
Statistics got here later. First got here the ICU.
The scholar spent practically three weeks on ventilator assist after a extreme an infection. “He was on the ventilator for nearly three weeks,” Dr Nair recalled. “However his dad and mom by no means left.”
His mom, sitting beside her son, stated, “We had been there day-after-day. We didn’t go house. We stored telling the physician, ‘Don’t fear, he’ll recuperate.’ We believed he would.”
He’s now in remission.
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For a 53-year-old businessman from Ahmedabad, the problem got here even earlier than the transplant. Checks revealed donor-specific antibodies, delaying the process for months.
“At the moment, I used to be very tense about what to do,” he stated. “For six months, they supported me. They decreased my antibodies. Then lastly I may bear a transplant.”
He underwent a haploidentical peripheral blood stem cell transplant in Might 2022. Nearly 4 years later, he returns for routine follow-ups. “Common follow-ups are crucial since you don’t know when the problems may shift or progress,” he stated.
Advances in haploidentical transplantation, utilizing half-matched donors, usually dad and mom or kids, have widened entry past the roughly 25 per cent of sufferers who’ve totally matched siblings.
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“Haploidentical transplant outcomes at the moment are nearly pretty much as good as matched sibling transplants,” Dr Nair stated. “That has been a significant development within the final 15 to twenty years.”
Some sufferers converse much less about survival and extra about continuity.
A 30-year-old skilled from Ahmedabad underwent an autologous stem cell transplant, which makes use of the affected person’s personal stem cells to switch bone marrow, for classical Hodgkin’s lymphoma in August 2019. She has remained cancer-free for over six years.
A 73-year-old lady from Vadodara identified with relapsed diffuse giant B-cell lymphoma noticed her most cancers return inside months of chemotherapy. In August 2025, she underwent CAR T-cell remedy. This can be a type of mobile immunotherapy during which a affected person’s personal immune cells are engineered to focus on malignant cells.
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“After six cycles, inside two months it relapsed,” her son stated. “We had been looking out all over the place. We had been in search of the best choice.”
“She bought a CAR T infusion on August 21,” he added. “Inside six months, she has recovered.”
“CAR T remedy represents a significant step ahead in precision immunotherapy,” Dr Nair stated.
These particular person recoveries unfold towards a big public well being burden within the state. Quoting information tabled within the parliament Apollo Hospitals stated over 77.34 lakh people in Gujarat have been screened for sickle cell illness, with 28,178 confirmed circumstances until July 2025. Nationally, greater than 11,000 people have been recognized with the blood dysfunction thalassemia main. India now has 167 transplant centres and has carried out roughly 35,000 bone marrow transplants.
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Price stays a figuring out issue. Autologous transplants usually vary between ₹8 to ₹12 lakh, whereas extra complicated procedures might price between ₹15 to ₹30 lakh relying on problems.
State well being assist schemes have improved entry, nevertheless, affordability and well timed referral proceed to form the selections households make.
For the daddy of the 16-month-old from Gandhinagar, the terminology of mutation, pancytopenia and transplant has narrowed to a single want.
“We simply need her to develop up usually,” he stated.
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(Nishant Bal is an intern at The Indian CategoricalAhmedabad)