21 January, 2021

Saved By Your Stem Cell

Thalassemia, leukaemia…these were words that only spelt the imminence of a life getting extinguished. But heart-warming stories from stem cell donors promise a better tomorrow.

Blood Relations
Vanshika Rohra with her parents in Mumbai.
Photograph by Dinesh Parab
Saved By Your Stem Cell

“I have a son. Stem cell donation blessed me with a daughter.”

Dr Shruti Kakkar

Donated her stem cell to Mumbai girl Vanshika Rohra

Since 2012, paediatrician Dr Shruti Kakkar has been with Ludhiana’s Dayanand Medical College, which has a department and ward that treats 300-plus thalassaemic children. But the 39-year-old Kakkar never thought of registering as a stem cell giver until she attended a mind-opening get-together that DATRI had organised in April 2017—a donor came from Dubai to meet the patient. “It reinforced my belief that stem cell donation can change someone’s life forever,” she says. It was inspiring for many who attended the meet, especially parents. And on May 8, World Thalassaemia Day, a registration camp for parents of thalassaemic kids was held in Ludhiana. More than 200 parents volunteered. “I announced on the stage that I would be the first to register. Also, I prayed that I should be the first to get a match too,” she says.

ALSO READ: A Second Shot At Life

Kakkar was in the US a month later and she got a call from DATRI that a patient in Mumbai needed her stem cell. She returned and went through the tests at the Christian Medical College in Ludhiana, a registered hospital for stem cell donation in the city. The result turned up a surprise: she’s all­ergic to wheat, something she never knew. Medication and a diet change followed. “In September 2017, I donated my stem cell. It was preserved at minus 70-degree centigrade and transported to Mumbai,” she says. When she met Vanshika Rohra, then four years old, after the donor-patient meeting emb­argo got over, Kakkar found a daughter. The mother of a son couldn’t be happier. Vanshika was diagnosed with thalassaemia six months from birth and the transplant was done at Kokilaben Hospital, Mumbai. Vanshika calls her masi, or aunt, and the two families are the best of friends ever since. “She was surviving on blood transfusions before the transplant. Dr Kakkar came to our life like an angel,” says Neeraj Rohra, the girl’s father.

“I realised the trauma when my mother was diagnosed with cancer.”

Debojyoti Banik

Donated his stem cell to a two-and-a-half-year-old girl

Fear, anxiety and helplessness rushed through Saifullah when a doctor in his village in West Bengal told him that his 18-month-old daughter, Shia, has blood cancer. That was in 2016 and prior to that he has never heard of this disease. He was told that blood transfusion every fortnight or so is the only way out to keep her alive. Saifullah didn’t give up hope and took her to the “big city doctors”, who advised that stem cell transplant can get off the cancer permanently. There’s a cure! And he almost jumped with joy. But then the process of getting to that cure was baffling for a villager with limited cognitive skills. Yet, as Andy Dufresne of Shawshank Redemption would say: “Hope is a good thing, may be the best of the things. And good thing never dies.” Hope was waiting for Saif and his daughter about a 100 km away.

ALSO READ: ‘DATRI Has 4.8 Lakh Donors…Less Than 1% Of India’s Population’

In 2007, a 14-year-old Debojyoti Banik in Calcutta took a pledge after his mother survived thyroid cancer—that he would donate his stem cells to save lives. “Since my mom’s cancer was detected at an early stage, she had an operation and rec­overed successfully. The whole experience was traumatic for the family,” he says. Years went by and Debojyoti bec­ame a software developer. The opportunity to keep his promise came in 2015 when DKMS-BMST, a stem cell registry, organised a camp at his office in Odisha. “I came to know that there are over 10,000 types of match criteria with a patient and there is a rare chance that I will become a suitable match for anyone,” he says.

It didn’t take long for Debojyoti to keep the second part of his pledge—to become a saviour. “In 2017, I got a call from DKMS-BMST. They said my stem cell matches that of a thalassaemia patient,” he recollects. But he didn’t know who he was saving because donor-patient identities are concealed from each other for two years. Debojyoti didn’t hesitate.

He was taken to Narayana Hospital in Bangalore (where he is currently based) and put through a series of tests to asc­ertain whether he was disease-free and fit. On D-Day, he was “excited and optimistic”. The procedure was simple and he didn’t feel any pain or contract any complications. His stem cell was transported to a Chennai hospital and it was transplanted on Shia. On February 4, 2020, Debojyoti met four-and-a-half-year-old Shia, a bubbly bundle of joy, when DKMS-BMST orgnanised a donor-patient meet in Bangalore. He couldn’t summon up words as he hugged the little girl and she sat in his lap. His message:  “Do get yourself registered, give your stem cell and save someone’s life.”

“My life is a gift from a London-based NRI.”

Vansh Adhlakha

Harshil Arora of London donated his stem cell to the Panipat boy

In 2006, two years after his birth, Vansh Adhlakha of Haryana’s Panipat was diagnosed with thalassaemia. And for the next 10 years, his father, a businessman, took him for blood transfusions every 20 days. “It was painful for me and my family,” says Vansh, who is now 16. Normally, thalassaemia patients find a stem cell match within their families—parents or sibling. Vansh’s sister volunteered in 2010, but that didn’t work out. “In 2016, my father registered with DKMS-BMST for a donor and I was lucky to get one within three months,” he says.

But his donor, Harshil Arora, was thousands of miles away. The UK-based lawyer had registered for stem cell donation at a London agency in 2015. Arora’s sample matched, he went through a peripheral blood stem cell collection (a non-surgical outpatient procedure similar to platelet donation), a vial was shipped out of Britain, and Vansh was readied for transplant at Christian Medical College, Vellore, Tamil Nadu, in 2017. “I was admitted for around 55 days. After the transplant, my life changed completely,” says Vansh, who now leads an active, healthy, normal life—“a new life”, as he would call it.

A couple of years later, in July 2019, Arora flew in from London to meet Vansh. “It was a wonderful experience. I got to know that our interests match too…like guitar, gardening etc. He is no blood relative but more than that. This life is his gift. I pray for him,” says the teenager, choking almost. For his part, Arora says people should come forward to donate stem cells bec­ause when so little effort is required to do such a positive thing, why not?

“We are indebted to a German who saved my daughter’s life”

Japishman’s mom Harpreet

Fabian Lapper of Germany saved Japishman with his stem cell

The family’s heart broke when six-month-old Japishman was diagnosed with thalassaemia in 2005. Wait. The doctor said wheatgrass juice helps in maintaining the blood count and so be it, the desperate family in Yamuna Nagar, Haryana, would take any straw in the wind that came by. Mother Harpreet began cultivating wheat all seasons—in air-conditioned greenhouses when it was too warm or cold—for a steady supply of juice from the young shoots. This went on for six years, but Japishman was not growing. At eight, she looked like a four-year-old. “The doctor advised us blood transfusion,” says Harpreet, who runs a computer learning institute with her husband.

In 2013, during a visit to Ludhiana, Harpreet came to know about stem cell transplant. Japishman was nine when tests were done to match her bother and parents’ stem cell type with hers. The results came negative, the family was shattered and she stared at a lifetime of blood transfusions. Wait, again. What about an unrelated donor? The family contacted DKMS-BMST in 2014 and within a month, she got a match in Germany. They paid Rs 32 lakh for the procedure, of which about Rs 9 lakh went to DKMS-BMST. “The registry doesn’t pay the donor, but their operative cost is quite high. In our case, it helped ship the stem cell from Germany to India,” Harpreet says.

In July 2014, Japishman got a new life at Christian Medical College, Ludhiana. Two years later, DKMS-BMST disclosed the name of the good soul—Fabian Lapper, a 24-year-old German who worked on a cruise ship. The family found him on a social networking site and communicated with him through Google translator:  English to German, German to English. “Now he has learned English a bit,” Harpreet says. “We haven’t met but are in touch, always. We share our daughter’s picture through WhatsApp.”

On September 27, as she blew the candles on her birthday cake, there were two names written on it with icing sugar: Japishman and Lapper. Well, they share the same blood group and were born on the same day. Japishman is in Class 9 and she wishes to visit Germany some day. And tell her saviour: Danke!

“I am eager to meet the girl I donated my stem cell to.”

Mohit Sirohi

He helped save a three-year-old girl in Chennai

Mohit Sirohi of Kurukshetra in Haryana was sceptical when he got a call from DATRI a few months after he registered as a stem cell donor in May 2018. He was told that a match has been found and he has to go to Delhi for medical tests. All of a sudden, reports of organ transplant frauds that headline newspapers flashed across his eyes. “These happen in big cities like Delhi. I didn’t want to be duped, lose my kidney or something. I decided to do my research on DATRI and stem cell transplant,” says the 23-year-old. He asked for time and googled the organisation’s credentials and discussed with doctors about any side-effects from the procedure. “I have three sisters and my father works in the Haryana transport department. I have family responsibilities. I wouldn’t risk harming my life.” His investigation helped and he was convinced about its safety.

A month before the process last year, Sirohi turned up in Delhi’s B.L. Kapoor Hospital, where he was examined and he signed a bond that he wouldn’t back off. Preparing a donor involves five shots injected in the stomach every day for as many days, which are, as Sirohi found out, safe and without side-effects. Many potential donors pull out at this stage. “My back hurt. I couldn’t sleep on my back. I used to lie on my stomach,” Sirohi says. The actual process of extracting his stem cell happened after that and it was over in four-five hours. “The thought of saving someone’s life makes the whole exercise bearable, enj­oyable. The pain is negligible,” says the man who completed his post-graduation in science from Karnal’s Dayal Singh College this year.

Will he do it again? Yes, and as many times as possible, he says. And whose life did he save? A little girl in Chennai and he is itching to meet her. It was arranged with mutual consent (sometimes the two-year embargo can be relaxed), but the coronavirus pandemic and subsequent stay-at-home restrictions pushed back Sirohi’s dream meeting. “I have the family’s contact number, but couldn’t get through. I want to meet and bless her for her happy and good life,” he says.

“My younger son donated his stem cell to his brother.”

Gauraksha Saini

The Saini second child saved the thalassaemic firstborn

Of all the fairytales by the Brothers Grimm, Hansel and Gretel could perhaps make a perfect bedtime story at the Saini household in Hyderabad. Sister Gretel saves her brother and herself from a cannibalistic witch. For parents Gauraksha Saini and Anita, the twist in the tale would be younger son saving older son from the witch called thalassaemia major, and the little one was actually born for that purpose. Yes, Mrs Saini conceived a second time in 2015 after the couple learnt that the firstborn has the debilitating genetic disorder and that the “unborn is the only hope as his stem cell could match his brother’s”. “There was 30 per cent chance that my unborn child’s stem cell would match, but I had faith and went ahead for a second child,” says Saini who works in a printing press. Wife Anita went through a battery of tests during her pregnancy—just to ensure everything’s normal and no genetic illness is detected in the foetus. “The doctors confirmed that there’s a 95 per cent chance our second child won’t have any health issues. He was born in 2016 and stem cell matched perfectly with my older son,” Saini recalls.

A second witch springs up in the Saini story: money. Doctors told him the transplant would cost Rs 14 lakh, an unassailable sum for a man of modest income. “I came to know through Thalassemics India that the health ministry, in collaboration with Coal India, runs a haematopoietic stem cell transplantation programme (HSCT). It is called Thalassaemia Bal Sewa Yojana. They sponsored a huge chunk of the medical expenses,” the relieved father says.

This government scheme provides a one-time assistance up to Rs 10 lakh to patients having stem cell donors within the family. “It was god’s wish. God kept showing us the way. I appeal to everyone to give their swab sample in any of the registries in India and become a donor. A small step for you will help someone live,” Saini says.

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