Ambassador Stories
March 5, 2021

I’m Grateful for Every Moment I Get to Spend Alive and Well

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In his own words, Thomas shares his experience growing up with Crigler-Najjar Syndrome, Type 1, and receiving a liver transplant that changed his world.

I painted a solemn picture against the sky as I stood alone on the shore of my beach, gazing in wonder at the patchwork of frozen circles covering the ground like snowy armor. Chilling seawater brushed the tips of my well-worn Nike’s, planting an icey kiss just beyond the reach of my senses. Above me, the noontime sun broke through a patch of cotton candy clouds and washed over the cove.

The sun, such a powerful thing. Such an elegant thing, such a regular thing. The sun, a celestial body of massive proportions in comparison to our own humble home. I wonder what the difference in size is between a person and the sun? Could two entities so different from one another have a complex relationship, maybe even a personal one...?

I was born via C-section on Sept. 2, 1999, at one pound and thirteen ounces after a rocky seven month pregnancy. Over the next three weeks, my overwhelming infantile jaundice was diagnosed as a rare liver condition called Crigler-Najjar Syndrome, Type 1. This disease rendered my liver without an enzyme that processed bilirubin, an accumulation of dead cells, toxins, and other unwanted substances the body needs to get rid of.

Due to high levels of jaundice caused by Crigler-Najjar, my skin and eyes shimmered with a burnished bronze tint that gave me a very unique appearance. In order to stem the ever-rising tide of bilirubin in my body, I slept uncovered underneath specially modified phototherapy lights that emulated the sun; the vitamins found in sunlight turned bilirubin water-soluble so that it could pass through my body. During the day, when the sun’s rays embraced the idyllic Maine landscape, I would stay outside, soaking up the rays like a sponge absorbing water. Then, after a long day out in nature I would find myself in bed, naked and cold, laying beneath a converted tanning light that shined an otherworldly blue. For ten years my brilliance soared and set with the unyielding sun, linking much of my adolescent life to the laws (and whims) of nature.

Then, in October of 2009, when I was 10 years old, I received a liver transplant at Boston Children’s Hospital. After an arduous 10 day recovery consisting of stents in the I.C.U and the Pediatric Transplant Ward, I returned home an entirely new person both in body and mind. The challenges of my old life were replaced by a plethora of hurdles in my new one, presenting me with the biggest adjustment period I had ever faced. Isolated in a three-month long post transplant quarantine, I found myself caught in the woven web of my coastal Maine neighborhood, left to explore the auburn November landscape as boldly as my tenuous frame would allow. Outside, alight with a topaz luster, my old friend the sun burned as brightly as ever, gracing the chilly days with a comforting warmth. Yet, beneath the surface of this innocent phenomena lurked a sad new reality.

Because my transplanted organ was a foreign object not originally found inside my body, I now had to take an immune-suppressent, a medicine that would slash my internal defenses so that my new liver could exist without being attacked by its host. However, one of the many side-effects of this new treatment was an acutely increased sensitivity to the sun, resulting in a greatly sharpened risk of contracting skin cancer. In the coming months, I found myself an outcast in my own world, resigned to the shadows, forced to hide beneath trees, umbrellas, a never-ending onslaught of hats and sunscreen. Even the dim luster of the winter sun was cause for worry, leaving me lonely and cut off from a presence which had always been by my side. Suddenly, in the course of a six hour surgery and its ensuing recovery, the sun, that fundamental, primal presence on which I had always relied for life, was now a threat to my health.

This dissonance crashed down on me with the weight of a mountain, threatening to decimate my resolve. The sun was my companion, my healer, my confidant; the medical community even refers to children with Crigler-Najjar as God’s Golden Children because of our golden hue and reliance on the sun’s powerful rays. I had lost a vital piece of myself, literally and figuratively, but even worse, was being forced to flee from an important element of my life, my identity. Just as the earth revolves around the sun, so had I, and now it felt like I was losing traction, slipping away from my own persona in the blink of an eye.

But, through this loss, I had learned to be grateful for the familiar moments in life, the regular moments. It is these comforting events that teach us just how delicate life is, how lucky we are to experience any precious stability we do have in our lives, those beloved, habitual patterns we forget to be mindful of.

Everyone faces loss, change, instability, hardship. Recognizing this truth makes hardship that much easier to face. Obstacles such as these, born of unique and perilous circumstances, have taught me to be so grateful for each and every moment I get to spend alive and well. That means each and every day, whether it coasts smoothly by or is rife with difficulty, will rise and fall like the sun, coming and going beyond our control, forever helping us learn to step back, remain grateful, and enjoy being here... for just one more day.

I joined AllStripes because I truly love the idea of people with rare conditions getting the chance to share their story, talk about who they are, and bond with others who, like them, have been through similar challenges.

If you have been impacted by
Crigler-Najjar syndrome type 1
learn more about the benefits of joining AllStripes
by visiting our
Crigler-Najjar syndrome type 1
research program page.