Lincoln’s story began like many others—with joyful anticipation and the dreams that come with welcoming a new baby. But everything shifted just hours after his birth when he failed his newborn hearing screening. Emma and JJ, new parents navigating the unknown, soon found themselves on a path no family expects.
At just seven days old, Lincoln was flagged for MPS1 on the newborn screening panel. The phone call was brief but life-altering. A rare genetic condition. A mention of a shortened lifespan. No context. No compassion. Emma remembers physically throwing her phone in shock. That moment marked the beginning of their MPS journey.
In the days that followed, Lincoln’s family endured intense fear and grief. “We were grieving him while holding him,” Emma shared, recalling those early days filled with unanswered questions and unimaginable anxiety.
But even in the darkest moments, their love for Lincoln was unwavering. Their focus became clear: to fight for his life, his happiness, and his future.
Living just 30 minutes from Cincinnati Children’s Hospital, Emma and JJ quickly connected with a specialized team. After considering their options including the clinical gene therapy trial in Minnesota they chose to begin enzyme replacement therapy (ERT) at just five weeks old, with a plan for a bone marrow transplant.
In this deeply moving episode of the Rising Up Rare podcast, Emma Mizer joins Allie Ladd to share Lincoln’s diagnosis story, their family’s emotional journey, and how they found community and hope through the Kennedy Ladd Foundation.
“That was the first time I saw kids thriving with MPS1. I finally believed it might be okay.” —Emma
Transplant, Recovery & Resilience
Lincoln was admitted for transplant in December 2023, just before Christmas. He underwent chemotherapy, received a bone marrow transplant on December 29, and spent six weeks inpatient. His first Christmas was spent in a hospital room—but filled with love, a tiny tree, and unwavering determination. The days that followed were filled with highs and lows: oxygen support, a PICU stay, intense bone pain, and eventually—an incredible milestone—100% engraftment. Lincoln had accepted the transplant. Since then, Lincoln’s journey has included additional hospitalizations, hernia surgeries, feeding challenges, and more. But through it all, his spirit has remained strong.
As of spring 2025, Lincoln is 19 months old. He recently began walking on his own, and therapies have become joyful playtime rather than survival work. His appointments are now spaced out, and the family is finally settling into a rhythm that feels a little more like life before diagnosis but with deeper appreciation.
Emma and JJ continue to advocate for awareness, better newborn screening communication, and emotional support for newly diagnosed families.
“Six months ago, I couldn’t talk about this without breaking down. Now I can, because I know our story can help someone else. If a newly diagnosed family Googles MPS1 and finds us—that’s why I share. That’s why we wear the shirts, post the pictures, and speak the truth. With awareness comes a cure. And with community, comes hope.” – Emma
What Your Support Makes Possible
Because someone shared, someone gave, and someone prayed—Lincoln is alive and thriving. Your actions today can do the same for another child.
Here’s how you can help:
Donate: Help fund life-saving treatment and research.
Share: Your post might lead to someone’s diagnosis.
Pray: Cover these families in strength and peace.
