The Mitchell Family
A Mother’s Journey * Community * Education
Let us introduce you to Lily. The mother who wanted to better understand what her newly diagnosed son Robert was going through
““My son Robert first started to show symptoms of EPP in February of 2022. Daily life came with new restrictions, We had to cancel some summer plans entirely. My goal was to protect him from sun exposure without making him feel different or disabled.”
“I quickly realized that it was me who needed the support. His condition became the most stressful experience of my life, leaving me constantly anxious about his well-being. I desperately sought to connect with others facing similar challenges to understand how they managed this rare incurable condition.”
“That was when I heard about the International Porphyria Symposium. The program features experts who could describe the clinical state of EPP and the latest advancements in its diagnosis, management, treatment and emerging therapies. The weekend also would feature patient interviews and conclude with a Patient Day .”
“As a single mother with limited income, attending the symposium represented a substantial financial commitment. Still I felt it was essential to be there.
To my surprise, Shadow Jumpers heard my story and reached out to inform me they would cover all my expenses related to the trip. Their gesture of support was both unexpected and allowed me to focus carefree on the weekend.”
“The symposium was more enlightening than I had anticipated. Witnessing the dedication of so many people striving to ease patient symptoms was inspiring. It instilled in me a sense of optimism and renewed hope. The opportunity to meet individuals affected by various forms of porphyria, hear their stories, share my own, and receive an abundance of warmth and support was truly invaluable.”
“It's a known truth that a happy mother is the foundation for a happy child.”
“The key lies not in succumbing to the disorder but in seeking ways to live a fulfilling life despite it.
I've shifted from a mindset of ‘we can't do this’ to one of "let's find a safe way to do it." This change in perspective has been crucial in my journey as a mom”
