It’s been an illuminating path to high school graduation with EPP

Celebrating a turning point in life with erythropoietic protoporphyria symptoms

Kristen Wheeden avatar

by Kristen Wheeden |

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In just a few days, our son Brady will be graduating from high school as part of the Class of 2023. It feels as though my heart will be wearing a cap and gown, crossing a stage, and accepting a well-deserved diploma. On a typical day, Brady’s passing wink and smile melt me, serving as a small but powerful representation of our special bond. I can only imagine the overwhelming pride I’ll feel watching him on graduation day.

Raising a son, after all, is quite a journey, filled with triumphs and challenges that shape not only his character, but his parents’ as well. Our family story is particularly unique, however, as we’ve had the privilege of nurturing three sons — including Brady, who has erythropoietic protoporphyria (EPP).

EPP, a genetic disorder, manifests from a deficiency in the enzyme ferrochelatase, which plays a critical role in heme production. As a result, Brady’s body is unable to process sunlight properly, leading to severe photosensitivity. Even brief exposure to sunlight can trigger excruciating pain, which intensifies with incremental exposure. While others may enjoy a mundane day outdoors, it becomes a battleground for Brady. He has always considered the sun his archnemesis.

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Watching Brady grow from a mischievous little boy in kindergarten, oblivious to the support system surrounding him, to the confident young man who recognizes and appreciates it all fills us with immense pride. As our son graduates from high school and embarks on his college journey, we reflect on our hopes for him and envision a radiant future.

At left, a young boy stands outdoors, with a low plant behind him near his feet and a larger bush farther back. A fence is in the background. He wears a blue cap, a white long-sleeved shirt, blue shorts, and a backpack with red shoulder straps. At right is a tall, dark-haired young man standing at an open gate, with a street and a large bush behind him. He wears black pants and a dark gray T-shirt, along with a backpack with tan shoulder straps. He's giving the thumbs-up sign.

Brady’s first day of kindergarten and last day of high school. (Courtesy of Kristen Wheeden)

Throughout Brady’s educational journey so far, every step had to be approached with caution, meticulous planning, and adaptability to ensure his safety. Every activity became an intricate dance, choreographed by Brady and his support system, aimed at avoiding potential dangers.

As we bid farewell to high school, we’re grateful to the extraordinary individuals who made Brady’s journey not only bearable, but exceptional.

Teachers went above and beyond to accommodate his unique needs, seeing beyond the shadows and nurturing his potential. Many found creative ways to bring light into the classroom, ensuring that Brady didn’t miss out on the joys of learning.

To his friends and their parents, who’ve been a bright ray of light in Brady’s life, we owe a debt of gratitude. They didn’t hesitate to seek shade, organize indoor adventures, and cheer him on from the sidelines during epic baseball games, where Brady was covered from head to toe in protective gear. These practices and games, held in the early mornings and late evenings, disrupted the sleep and schedules of others, but they accommodated Brady’s needs. For that, we’re truly grateful.

We appreciate the unwavering support of Brady’s older brothers, whose love and care transcended the boundaries of siblinghood. They became his guardians, standing by his side during the darkest moments. They navigated the complexities of EPP alongside Brady, teaching us the power of loyalty and brotherhood.

Brady’s fan club extends to his doting grandparents, always there with love, a hug, and food.

Then there is Mike, Brady’s dad, who embodies the qualities of strength, love, and advocacy. He stands as a steadfast pillar, tirelessly supporting his child through every obstacle. Mike is the kind of father who ingeniously sets up countless canopies, coaches teams to accommodate Brady’s needs, purchases all manner of sun protective gear, and turns ordinary days into extraordinary experiences, despite the challenges of the sun.

To Brady, as you embark on your journey toward your college dreams, remember that you carry the love and support of an entire community with you. We have no doubt that you’ll shine brighter than any star in the sky. We know that a little humor and an abundance of love can conquer even the darkest shadows.

College, with its myriad of opportunities, will undoubtedly present its own set of hurdles. Yet Brady’s journey has transformed him, making him capable of navigating life’s challenges with independence and resilience. We know that he’ll continue to defy expectations, carving out a path that is uniquely his own, and that he’ll overcome any darkness that may come his way.

As he continues his journey in college, we back on the home front will continue to work in patient advocacy to advance awareness, research, and therapeutics for all the porphyrias.

Recently, I received a call at United Porphyrias Association from a terrified mother of a 7-year-old boy with EPP. My fellow caregiver was unsure if she and her son could withstand the hardships this disease brings. Reflecting on where we are in our journey, I confidently reassured her, sharing that with a lot of work, faith, and community, her son will be OK, and so will she.

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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