Porphyria warriors: Gone too soon, but not forgotten
In the wake of loss, we remember contributions to our community
Sometimes hope feels heavy.
In the past several months, the porphyria community lost several beautiful souls. They were different in age, type of porphyria, and geography, but all were taken too soon. As I sit at my desk at the United Porphyrias Association office (where I serve as president), looking at the bulletin board behind my computer where I keep pictures of our fallen members, their faces stare back at me. Alongside too many others.
I know their names. I know their stories. I’ve learned about their pain. And it scares me when thinking about my youngest son, who lives with erythropoietic protoporphyria.
And I grieve.
As I remember them, they were more than porphyria.
Remembering our departed
Lindsay Spengler. (Courtesy of Catagnus Funeral Home & Cremation Center)
Lindsay Spengler was just 40 when she passed away last October. A competitive athlete, she loved sports, the outdoors, gardening, and family gatherings. She had a fierce streak, whether on the softball field or around a board game, and a deep faith that grounded her. She battled acute porphyria with courage and grace.
After her passing, her mother sent us six vials of Panhematin (hemin for injection), packed with hope that they might help others. And they did. We shared those vials with three researchers. Her legacy will ripple outward. Even in her passing, she gave hope.
Then came the news of Franklin Ross. Sweet, love-filled Franklin. Just 3 years old. He was diagnosed with congenital erythropoietic porphyria, and his family faced hard decisions, including a bone marrow transplant — their hope for a life free of pain. Complications took his life on March 31.
I remember, shortly after he was born, his parents’ joy when a local window-tinting dealer installed ultraviolet protection on their home for free, one act of kindness in a sea of impossible moments. Franklin’s light was bright. And far too brief. His obituary called him “a whisper on the wind, a ripple on the water” — a testament to enduring love.
Lou Varvarezis. (Courtesy of Melissa Varvarezis)
More recently, there was Lou Varvarezis, a man with deep eyes, quiet wisdom, and a fierce devotion to his family. He lived with acute hepatic porphyria, carrying pain few could imagine. Lou was a pharmacist, astrophotographer, and amateur astronomer who lit up when sharing the sky’s beauty.
I met Lou and his incredible wife, Melissa — who embodies strength and compassion — at our Chicago Porphyria Palooza last October. Surrounded by others who understood, Lou felt seen. He said he’d finally found his people.
He passed this month, but he leaves behind constellations of love, laughter, and awe. His obituary invites us to honor him by taking time to “fire up the grill, play some Rush, and spend some time gazing at the night sky.”
Assessing our losses
Three stories. Three heartbreaks. Three reminders of why we do what we do.
Porphyria doesn’t care how old you are. It doesn’t care how kind, brave, or faithful you are. It’s ruthless. Yet in the face of its cruelty, I’ve witnessed the most profound acts of courage and unity.
Each time we lose someone, it chips away at my heart. And each time, somehow, I feel more committed. To study more. Advocate louder. Build stronger bridges between patients, researchers, and regulators. Light the path forward, even when it feels dark. Because these lives mattered. They mattered when they were here and they still matter now.
Lindsay, Franklin, and Lou are not just names on a memorial list. They’re why we strategize and expand, collaborate and recruit, support and connect. Why we keep going when the odds are stacked, and funding is hard-won.
To their families, we thank you for sharing your loved ones with our community. For letting us carry their names forward.
To our community, I see your grief. I share your tears. You’re not alone.
To our future, we owe these three, and all those before them, our full hearts. Our full hope.
So yes, I cry. I grieve. I sometimes feel broken by this advocacy work. But I also believe. I believe that together we’re building something that will one day ensure no child is kept inside, no mother sends leftover vials after a funeral, no caregiver says goodbye too soon. And I’m grateful for all of you who are on this journey with our porphyria community.
With love,
Kristen
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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