Alina and Allie

“Alina’s Story – A Journey of Strength, Loss, and Hope

Our story with HLH began before Alina was even born, with her big sister Allie. Back then, we had never even heard of HLH — Hemophagocytic Lymphohistiocytosis — until Allie was diagnosed. We were thrown into a whirlwind of medical terms, treatments, and hospital stays, desperately hoping to save our little girl. Despite the incredible fight she put up, Allie passed away in April 2020 after contracting Adenovirus during transplant. Losing her was the hardest thing we have ever faced.

After her passing, doctors told us that any future children would have a 25% chance of having HLH too. That knowledge stayed with us, weighing heavy on our hearts.

Two years later, we found out we were expecting another baby — our rainbow after the storm — our Alina. Because of what we knew, we chose to have her genetically tested. The results confirmed our fears: Alina carried the same PRF1 gene mutation that caused Allie’s HLH.

Our family quickly rallied around us, encouraging us to get a second opinion at Cincinnati Children’s Hospital. They even helped us raise money to get there. During our very first consultation, Dr. Jordan sat with us and explained that yes, Alina would need a bone marrow transplant. At first, we thought we’d return home to Texas and do her transplant at Texas Children’s Hospital — a place I was familiar with and where we’d be closer to family.

But before we left Cincinnati, Dr. Jordan asked if he could give Alina a dose of etoposide and steroids to calm down her flare before we traveled. We agreed — but that night, I had this overwhelming feeling in my heart that we weren’t supposed to leave. Something told me that if we stayed, she would be okay. I shared this with my husband, and together we decided to change our plans and stay in Cincinnati for her treatment.

That decision brought me such relief.

A few weeks later, after testing for a donor match, Dr. Jordan told us there was no perfect 10/10 match for Alina — meaning we’d need to consider a Haplo transplant, where a parent becomes the donor. It was scary, but when I found out I would be her donor, my fear was replaced by pride. What an honor — not just to be her mom, but to give her a second chance at life.

On June 29th, 2023, Alina received her new stem cells — my stem cells.

The road wasn’t easy. She faced complications like IPS and VOD, but Alina proved to be stronger than every obstacle thrown her way. She fought, she healed, and she turned every single corner with so much bravery.

Today, Alina is two years post-transplant. She is thriving, smiling, and showing us every day what a true fighter looks like.

We are forever grateful to the HLH Heroes Foundation, who helped us so much during our stay with necessities, gift cards for food, and support during such a difficult time. Their generosity helped us focus on what mattered most — helping Alina heal.

Our journey has been filled with heartbreak, fear, courage, and ultimately hope. We carry Allie’s memory with us every day, and we know she was watching over her baby sister through every step of this journey.

Alina’s story is one of strength, love, and miracles — and we are so thankful to still be writing it.”

Thank you to Allie and Alina’s family for helping to spread awareness about HLH and for sharing their stories