My father’s legacy is the embodiment of hope in action

One of my greatest heroes and mentors has always been my dad. Sadly, we are coming up on the first anniversary of his death, and I keep catching myself talking to him in my head.

He was amazing, not in a loud way, but in a beautiful, quiet way. I truly believe he prepared me for the world I now live in — running a nonprofit, while also embodying the giving, kindness, and connection he modeled throughout his life.

He wasn’t a fancy person. He grew up in midwestern Canada, came to the United States with $50 in his pocket and a bride by his side, and built a life from there. That bride, my amazing mom, is another mentor of mine.

With my dad, it was all about hard work and no shortcuts. Most people knew him as a natural leader, and he was quick with banter with everyone. He wasn’t on social media; he just quietly, anonymously, and generously liked to help. And there was always a lesson attached to anyone who did wrong.

My dad and I were very much in each other’s fan club. He put me on my first board of directors so I could learn how decisions are made. I now serve on several boards and report to one as the leader of the United Porphyrias Association. I still feel that Canadian, scrappy, “show up and do the work” influence in almost everything I do.

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My dad also influenced my son Brady, his grandson, who lives with erythropoietic protoporphyria (EPP), a rare disease that makes him simply “allergic to the sun.”

When Brady was little, we did the 32-second test, sitting in the shade while he slowly put his hand in the sun and told us when it started to hurt. Thirty-two seconds. That number dictated where we parked, how fast we walked, and which door we used. It was a harsh little clock always running in the background. My mom and dad supported this life and gave Brady time and opportunity, in spite of the sun, to live his best life.

What my dad did not get to see is what has happened since.

Today, Brady is in college. He travels regularly for his treatment. He participates in research. He sits in rooms with adults who care deeply about EPP and holds his own in the conversation. His life still has limits, but he is no longer confined to those 32 seconds. He is building a life around them, backed by a community that understands.

If I could sit with my dad now, I would start there. Then I would tell him about that community: our porphyria family.

I would tell him about Candace, who sent an entire lobster dinner to Victor when he was having a tough time in a clinical trial. About Craig, who helped Justin by tinting the windows on his car so he could drive without burning. Or about Mayra, who has helped build an entire team of Porphyria Ambassadors to support others. My dad would like those stories.

I would tell him about “Porphyriapalooza,” where we gave Ginger the title “Patient Concierge.” Her whole job was to be the person every patient could call if something went sideways. If someone needed a quiet room, a snack, a wheelchair, or directions to a hospital that understands porphyria, she was on it.

I would tell him that we have lost people in our community this year, and that we say their names out loud. We read their obituaries. We check in on their families.

We planned a small, meaningful family memorial for Dad at his favorite golf course, honoring his request for a “last chance at a hole-in-one,” and I recognize that same mix of grief and humor in the way this community remembers its own.

Finally, I would tell him about my side of it: The work has evolved into grants, research networks, camps, trial buddies, and coalitions. That we are trying to make sure no one with porphyria is left alone in the dark, literally or figuratively. That I am tired sometimes, yet when I ask, “Does this matter?” the answer is always found in the people.

I know what he would say. “Look at them. Look at how they treat each other. That is your answer.” It is a resounding yes.

As his one-year anniversary approaches, I find myself telling him these stories, holding both the ache of missing him and the comfort of recognizing his same quiet kindness all over this community.

That is what I wish I could tell my dad. And maybe, in writing it down, I just did.

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.