SYAM KUMAR S.S., from Kulathummal village in Kerala’s Thiruvananthapuram, is recognised by the International Book of Records as the youngest person in the world to achieve two major feats with a prosthetic leg: completing a solo skydive from an altitude of 13,000 feet and becoming a certified paragliding pilot.
Born with severe congenital health issues, including limb anomaly, a malformed renal system, a spinal tumour and congenital scoliosis, he had his first surgery 19 days after birth. At eight, his right leg was amputated. He has undergone 16 surgeries, the most recent being a life-saving renal transplant, with his mother as the donor.
However, chronic illness, isolation, bullying and near-suicidal struggle could not drag him down. The 24-year-old spoke to Senior Assistant News Editor Ajish P. Joy. Excerpts:
Ajish P. Joy/ Welcome Syam. The 15-20 minutes we have will be inadequate to say everything you have gone through and what you have achieved. So, straight away I will request you to share your story.
Syam Kumar/ Good evening everyone. When I was born, my mother was introduced to an infant with limb anomaly—my leg was attached to my spine, near my buttocks—a duplex renal system and congenital scoliosis. My mother, from a poor family, initially felt overwhelmed, and, unable to face the challenge, imagined me dying there.
I am still proud of her choice: she did not take shortcuts to save me, instead choosing scientific options and trusting the doctors more than anything else. So, I also believe in doctors more than God. I know there were no other powers to save me. Doctors are my God; that’s why I am alive now and able to do all these things.
Ajish/ What were some of the key procedures that drastically changed your life?
Syam/ When I was born, doctors had no idea how to treat me. I had so many conditions. By the time I was eight, I had already faced 12 surgeries, including the removal of a spinal tumour. My kidneys were constantly failing because of the duplex system—urine was going back into them. I struggled with urinary tract infections and started using CIC (clean intermittent catheterisation) when I was five because I had reduced bladder capacity owing to the spinal condition. At school, I was bullied because I had leakage and because of my leg. I had no friends. I would sit in a corner, often having to clean myself in the evening before I could sit there the next day.
Even as a teenager, I kept pushing. When I was 16, I started cycling with urine tubes and bags. This was after bladder augmentation surgery and I was not supposed to take such risks. I started with a challenging 100km ride. [Vitals were suboptimal], making it incredibly hard to push myself. But in three years, I was doing 100km in five hours. I even did 250km in 12 hours, cycling with a catheter grinding in my bladder, causing bleeding. I completed the event, draining urine mixed with blood twice. That was risky.
Three months after my mother gave me her kidney, the transplant was rejected. While I could still live, my dream of becoming a paralympic athlete—which had driven me to swim, climb mountains and try slacklining—was shut down. I went through three years of dialysis, which cost me all my dreams. I felt hopeless, to the point of feeling there is no point in living.
Ajish/ But, you didn't give up. Let's move to your new dreams: skydiving from 45,000 feet, right?
Syam/ I was struggling with depression after the transplant. I was physically active outside, but completely suppressed and unable to move much in my room. That’s when the suicidal emotion hit. But I had to live, because my mother had given me a kidney.
The desire to die changed into a positive drive thanks to an anime series, Attack on Titan. I saw a skydiving scene and thought, “Let me die in a skydive.” That triggered me to try and do a solo skydive. The United States Parachute Association rejected me 144 times.
My first jump was solo. During my third jump, I got into an extreme spin. The G-force was immense. I managed to pull the parachute upside down, but the canopy tangled my head. For four seconds, I thought I was dead. There was no way to save myself. But in milliseconds, I untangled it and landed.
When the chief instructor saw me, he immediately gave me his instructor’s suit label, saying, “Nothing is going to happen in your life. This is the ultimate test.” The spin happened because of the prosthetic limb. They initially decided I couldn't jump any more.
But I managed to save up money, cleaning wash rooms, working with Zomato, and as a videographer despite my spinal pain and medical needs. I chose to fly without my prosthetic limb. I don't have symmetry, but I can fly and track now—the most challenging part of skydiving. Next, I plan a 45,000 foot jump, where the temperature is minus 70 degrees Celsius. I want to try a wingsuit. Skydiving is now too small for me. I want something extreme, like Formula 1, perhaps handling four or five Gs.
Ajish/ Do you have a message for the doctors and medical experts in the room?
Syam/ Keep updating. No matter what you study, keep studying about new revolutions in health. Some doctors made my dreams and life seem very small. But other doctors changed my life. They are the good doctors. Be a good doctor for society. Even if the patient has extreme physical conditions or financial limitations, keep updating your studies to help them. Make them feel alive.