A son who gave away his intestines, skin, bones, four internal organs and even blood to save 34 lives after his death, and a daughter who risked all to opt for the un-established stem cell therapy for MS, here’s a family that shows us the real meaning of life. SHAlINI SAKSENA brings you a report
On December 8, 2012 Anmol Juneja, a 20-year-old BCA student, met with an accident — his bike rammed a tractor that had iron rods sticking out. It was dark, around midnight, and Anmol didn’t see the rods. They went into his eye — severely injuring his brain. A passerby saw him lying on the road and informed the family.
That call is vivid in Anmol’s father mind. “Anmol left from the shop around 8:45 pm to meet his friends at the Pacific Mall. When he didn’t reach home by 11.45 pm, I called him. He told me he was at Patparganj and had got delayed because his friend’s bike broke down and he was dropping him. At 12:10 am, we got the call. A stranger told me that a young man was lying on the road after an accident and he was calling the last number from the victim’s mobile. I asked him if the victim’s bike was red. He said ‘yes’. I knew it was my son,” Madan Mohan Juneja, who owns a school uniform shop — Anmol School Uniforms in Shahadara, recalls.
“That call changed our lives forever. My elder brother had spoken to Anmol minutes before the accident. Anmol was my brother’s only son. We rushed to the hospital where Anmol had been taken. Doctors told us he was brain dead. Even though his heart was beating and he was breathing, he was in fact dead,” Devender Juneja, Anmol’s uncle, recalls.
The family rushed him to Max Hospital where doctors said Anmol was critical. “I knew I had lost my son. Still I called a friend in Japan who consulted a doctor there. When I didn’t get a reply, I knew there was no hope,” Madan says.
The family are the followers of Radhasoami sect. Ten days before Anmol’s accident, the entire family — Madan, his wife and Anmol — had gone to meet their guru. There, they saw a documentary on organ donation. When Anmol was declared brain dead, something clicked in Madan and he decided to donate his son’s organs.
Eye donation was not new to the extended family with Anmol’s grandmother gifting her eyes on her death. But for Anmol, it was for more than just the eyes. “When we took the decision, we thought that only liver, kidneys, eyes and probably the heart could be donated. We didn’t know that Indian hospitals were capable of harvesting so many other organs too,” Devender says.
Preparing Anmol’s mother for this came much later, after a long chase and calls to a few hospitals that the family was referred to. It was a Sunday (December 9). Ganga Ram Hospital did not respond and finally Anmol was brought to the AIIMS trauma centre for organ harvesting.
The doctor told them that a team of three doctors would observe the patient for six hours and only after their verdict would the donation take place. After six hours of observation, Anmol was finally declared brain dead at the AIIMS Trauma Centre.
Five witnesses were needed for the procedure to begin. “Anmol’s mother’s signatures were mandatory. I requested them to leave her out but they insisted. When she was told Anmol had been declared dead, she had a heart attack. We were lucky it was in a hospital and the doctors were at hand,” Madan recounts. Even today his wife gives him Rs 700 everyday, the pocket money she used to give Anmol. This money is spent on buying medicines for the needy.
Organ donation did not come easy for the family. First came the question if the intestines could be taken out. The family agreed. Then, the request for four other organs. Next, the doctors asked them if they could take the femur bone out too since they are the strongest in the body. The Junejas agreed despite being told that once the bones were removed, there was no way that they could pick up the body in their hands.
The doctors came again, his time, with the request of draining seven litres of blood from Anmol’s body. The family said yes to that as well. Another doctor wanted to know if they could take the skin as well. “We were told that there are many acid and burns victims who don’t have enough skin for a graft. Anmol’s skin would help these victims. We agreed. This came with a rider. There was no way that we would be able to see the body after the skin was removed. The sight, the doctors said, would be unbearable. We told the doctor that we have lost a son; we want to remember his smiling face, not his dead one. Please take whatever you want. Just put someGangajal in his mouth and pack him properly for a proper Hindu cremation,” Devender tells you, sobbing by now.
The only organ that the doctors couldn’t take was the heart since they couldn’t find a recipient as it needs to be transplanted within six hours.
Just then, the Nirbhaya incident had taken place and the Junejas got a call requesting if they would be willing to give Anmol’s intestines to her. “I told the person who had called that we would not have a problem but we had already given permission to AIIMS to harvest as they pleased. They would have to call them.
Of the 34 people that Anmol saved, we only got to know three. One a 58-year-old, who was on end-stage of liver failure, another a 44-year-old mother, who was suffering from kidney failure. The third was a young woman who turned out to be my friend’s sister. Usually, the hospital doesn’t give out the information about the recipient. But we came in touch with these people when my brother was spreading awareness about organ donation with a message that if ever any of the recipients needed money for further treatment, they could contact the Junejas. We lost one son but now he lives in 34 people,” Devender says.
Max Hospital said it would cost them Rs 80,000 a day to keep Anmol on life support. “It was not about the money but I didn’t want my son to die like this. I took the decision to donate his organs once I was told that there was no way he would ever recover. It was only a matter of how much time it would take for his heart to stop beating since he was healthy and young,” Madan tells you.
With Anmol gone, Madan lost all interest in business. Though the shop is still there, he doesn’t go there anymore. His wife has taken over and wants to keep working till she dies. The days, he tells you, are easy but nights are difficult even though five years have passed.
Two years down the line, the family had just started to pick up the threads of their lives when in 2014 came another shocker. This time it was Devender who was to stand trial. His daughter Kanika (20 then) was diagnosed with Multiple Sclerosis (MS).
“On September 20, 2014, I got the first attack. It happened again the next day. Tests were done and they found lesions in my brain. At AIIMS, doctors confirmed I had MS. Acceptance came once the symptoms started re-occurring. I started stammering, couldn’t walk straight and that’s when it all sunk in,” Kanika tells you.
For the family who was just recovering from irreversible loss, the news that yet another child had a disease that had no treatment was shocking.
“I still remember that day. Kanika told me that she was getting dizzy spells. I thought it was due to dieting. I asked her to eat properly. Her mother, Anita, gave her nimbu-paani. She had another attack in the night. Her legs started to shake; I rushed her to the nearby hospital. Two hours later, they discharged her. The next night, the attack happened at 2 am. Again I rushed her back and doctors said she may have MS. I hadn’t heard of it. So I consulted another neurologist. Imagine, this one didn’t even know what MS was. So I took her to AIIMS where it was confirmed. They put her on steroids which were extremely expensive — Rs 7,500 a week. I could not afford Rs 30,000 a month. My wife sold her jewellery for the injections for a few more months. But I have two more children, I had to think of them too. My elder daughter, who wanted to study further, took up a job so that we could treat Kanika. But the money was drying up. It was then that Kanika told me that these injections were not a cure, they were just stopping the problem from accelerating. She stopped taking injections and put herself on an injection that would cost us Rs 1,000 a month. She read up a lot on MS on the Internet and came to know of another patient who had had a Hematopoietic Stem Cell Transplantation (HSCT) done in Russia. We called him. He gave us a lot of hope. The cost of the treatment was around Rs 55 lakh. It meant selling our 50 sq metre house in Geeta Colony in East Delhi,” Devender says.
MS didn’t dampen Kanika’s positive attitude even though it took her two difficult years for her to surface. “My attacks were frequent. I had to take injections but we couldn’t afford it and after five months, I told the doctor that I would no longer be able to take them. He put me on another injection which was cheaper and the medication continued. For the next year, all was good. In April 2016, I get another attack. This time, my left side was paralysed. This is when I applied at hospitals for bone marrow transplant (BMT) in Chicago, The Philippines and Russia for a Cell Stem Therapy.”
A few months later, the family came to know that HSCT was available in Artemis Hospital in India too. The treating doctor was Dr Rahul Bhargava but since he later moved to the Fortis Memorial Research Institute (FMRI) in Gurgaon, that is where much of Kanika’s treatment took place.
“He had one look at the MRIs and told me that I was a perfect fit for HSCT. He took us through all the steps. Finally, I was admitted on January 5, 2017 and the procedure was done. On January 26, I was discharged. And here I am today — fit and fine,” Kanika says.
She tells you she was prepared to die on the table. “I was any which ways dying. I didn’t know which part of my body would get affected. I wanted to take this chance,” Kanika, who spreads awareness on MS through Facebook, says.
“I want people to know that there is an alternative treatment available. I didn’t know of it, I am sure there would be many like me. Also, I want people to understand what happens. In India, there is a lot of stigma attached to diseases that people have not heard of. For example, I knew that the treatment would lead to hair fall. Before I went to the hospital, I had my head shaved,” Kanika says.
“After the treatment, her immunity was zero and she had to be kept in isolation to avoid infections. Chemo had made Kanika fussy and appetite zero. I could meet her only once a day. Thanks to my wife, Kanika is fine today and off all medications,” Devender says. His brother-in-law gave around Rs 12 lakh — Rs 10 lakh for the treatment and Rs 2 two for preserving Kanika’s eggs since chemo could destroy them and she may have problems in conceiving later. “I am indebted to him forever. He saved my daughter,” Devender says.
According to Dr Bhargava, director, Haematology and Bone Marrow Transplant, FMRI, Kanika had a relapsing and remitting case with multiple episodes of MS. One has to understand that HSCT is not a cure for all MS patients. “The idea is not to tell the world that this cure is the Holy Grail for all MS patients. What is important here is to choose the right patient, to provide maximum benefit. It is not about early stage disease or late but about primary-progressive MS or relapsing and remitting MS. They benefit the most. It depends on the sub-type of MS,” Dr Bhargava explains.
The reason why MS patients have been on injections till now is because bone marrow transplant is a fairly new technique. It had to be proven beyond doubt that this treatment actually worked. It has taken around six years to give the feedback that it provides benefit for MS patients. It has now slowly moved to a level where it will be considered as third line treatment.
In this treatment, first the patient is assessed. Second, the stem cells are taken out with the help of an injection which are frozen at minus 180 degree C. “The patient then undergoes chemotherapy for six days to wipe out the existing immunity completely and bring it down to that of a new born. On day seven, stem cells are re-infused which grow into normal blood cells by day 14,” Bhargava tells you.
The good news for MS patients is that after HSCT, 60 per cent people will be MS free — no further attacks. Patients who have a disability have a 30 per cent chance of recovery within a span of one to two years.