About Me

My story began on May 26th, 2007. My time here was short, but full of love, laughter and obstacles. Even as it stands today the best minds in North America are unable to unlock what prevented me from staying with my family. My family and I tried so hard to hold onto each other, but nothing worked. As far as science can determine my lungs were not compatible with life, but that is a mystery in itself, as I stayed with my family for almost eight years before I was taken away from them. Maybe in time as they study my case with advanced technology and better understanding they will be able to give my condition a name. Our hope is that better treatment or even a cure will be avaiable for those that come after me with the same obstacles.

As for me, I fought for 8months in the Neonatal ICU when I was born, fought against those that wanted me to give up and fought alongside those who believed in me and wanted me to go home. Over time, I got rid of the respirator, became more stable on my oxygen supplement and in December of 2007, I made it home. I did come home with oxygen tanks, monitors, and feeding pumps, but I was home.

Once home, my family and I were told I might not be able to sit or eat, let alone walk or speak. Again thru perseverance and hours of hard work by my family and I, we were able to beat the odds. I sat, I stood, I walked, I started to talk to the point I would never be quiet, and finally I ate.

I loved life, I felt I was not just the center of my family’s universe, I was their universe. I was treated like a king; anything I needed was there, never did I hear a complaint about my care. I was so loved I never let all the machines attached to me bother me. I never complained - I loved life, everyone loved me and I loved everyone.

There were times when I could feel what was going to happen before it actually did. I felt I could see the world with my insight rather than my eyes, and I could sense people and what they were about more so than others. When I expressed this to my family, I heard them say, “He is an old soul, he has been here before, and there is more to him than meets the eye.” But with time I learned to be silent about these gifts as it seemed no one else shared them. I used to hear that a special energy surrounded me, that there was an aura around me. Maybe this was just the love emanating from me and reflecting what I was receiving from everyone else.

I loved the beach, the intensity and the vastness of it, I used to sit and stare at it for hours, Life - maybe that is what it reminded me of. I would even take steps into the ocean with everything attached, with the help of my family and nurses. It was like I was stepping into my own life, calm one second and rocky the next, but holding my own at all time.

I loved music. I could jam to Beyoncé’s “Single Ladies,” to Bruno Mars’ “UpTown Funk,” or to any good Bollywood or Bhangra song - if the beat was good I was in. My forte was dance parties, disco balls, and dance partners. At ICU or at home you could hear the music going a mile away.

Once I started to eat I fell in love with food. Eating it, watching YouTube recipes or cooking channels, I loved food. Above all I loved to share it with everyone around me. No one ever left our home hungry and even in the ICU I always made sure I had something to give to all my doctors and nurses, be it Cheezies or chocolate bars, if not samosas or other exotic foods.

I was doing very well until I turned four. It seemed for a while I would recover on my own as my lungs grew and this undiagnosed condition would just go away. But sadly that was not the case. Slowly as my oxygen needs started to grow, I was supplemented with more oxygen and more drugs, but it was not making any difference. For the final leg of my journey my mom and I ended up in the ICU at BC Children’s Hospital, and from there I was to go to Toronto to be listed for a lung transplant as they too could not control my increasing oxygen needs. Then due to an unfortunate accident at the hospital I became worse and the incident left my kidneys compromised. Toronto declined to accept me as a transplant patient because of my kidney problems. I had nowhere left to go. All the hospitals contacted thru BC Children’s declined me but once again my family and I rose to the challenge ahead of us. Instead of admitting defeat to my disease we found Dr. Goldfarb at Children’s Hospital of Philadelphia (CHOP). Once again we fought against those who opposed us going, and fought alongside those who supported us, and in June 2014 I headed for Philadelphia.

When I reached Philadelphia I could not even move my legs but thru perseverance, hard work and being pushed to the utmost limits I started to walk again. I was listed for a dual lung-kidney transplant in September. Internally I knew I was not going to get new lungs and would never get to go home. I did express this to my mom, but she never believed me and said that we came here to get better and go home, but I knew the truth. I continued to laugh, dance, play, cook (Easy- Bake Oven) but no organs became available for me.

And then my body started to give up. On May 14th, 2015, 12 days short of my 8th birthday, I became bigger than life - my family’s Guardian Angel.

This is me, Viraj Singh Shahi.