Heidi

Heidi is making it her goal to bring awareness to everyone about HLH, she has decided to do that by becoming a committee member in our foundation!! We are so excited to have her! Here is her story:

At 6 years old, I was given a 20% chance to live. My organs were shutting down, and my family was being prepared for the worst. But against all odds—and with the gift of a stranger’s donation—I survived. Yes, not common within the community, I was 6 years old when my mom followed her instincts that day in April 2008, and rushed me to the ER. What we thought was a stubborn stomach flu was actually Primary HLH, a rare and devastating immune disorder. By the time doctors figured it out, my organs were shutting down and my survival rate had fallen to 20%. I was diagnosed due to the story of a 16 year old- even more uncommon, especially back then- who became close family friends, and a support system, during and after treatment. Without him and his doctor, I would not be here today.

The months that followed were a blur of chemo, steroids, daily shots, 26 different medications daily, ICU stays, ventilators, and a central line. My hospital room became my world, Scooby- Doo and SpongeBob my companions. At one point, I went 100 days without going home. Doctors began searching for a donor, and my parents were told my little brother was a match. For a moment, there was hope—but then we learned he carried the same genetic mutation. And with this knowledge, we had to move on and keep trying.

On July 31st, 2008, everything changed. I received a bone marrow transplant from an anonymous donor’s cord blood. That gift of life came with battles of its own—graft versus host disease. But slowly, the donor’s cells began to take root, and against all odds, they became my lifeline. That November, just before Thanksgiving and just before my little brother was born, I was finally able to go home.

Seventeen years later, I’m still here. HLH left its marks on me—hypothyroidism, cataracts, diminished ovarian reserve, the reality of being diagnosed as perimenopausal at 13 years old, the inability to receive genetic testing as my donor was a male, rendering them unable to test due to them thinking the labs were contaminated. My dental health has declined, I’ve fought fibromyalgia for over a decade, and my immune system is fragile. I still deal to this day with PTSD flashbacks of the hospital, brought on by certain smells and noises. These are the pieces of HLH that never go away for me.

But I’m alive. I carry the scars, the side effects, and the memories, but also the miracle, and the guilty curse, that is survival. I share my story to honor my mom’s courage, my parents' resilience and faith, my brother’s part in our journey, and the countless families who are still searching for answers. HLH may still be unheard of, but our voices together can make it known. Together, we can make a change!