Help Gemma Access Lifesaving PKAN Care and Support the Cure

Hello, we are the parents of Gemma, Alexandra Gonzalez and James Peggs. We’re reaching out with hopeful hearts and a deep need to share our story.

Our daughter, Gemma, is 4 years old — full of curiosity, imagination, persistence, and light. She loves to play, tell stories, and explore the world with a big heart and a brave spirit. But behind her smile is a very rare neurological condition that has changed the course of her life, and ours.

Our Journey to a Diagnosis:

After noticing subtle delays with balance and coordination, we began a journey of testing, therapies, and appointments. An MRI showed changes in a part of her brain responsible for movement and coordination. Genetic testing revealed that she has a mutation in the PANK2 gene, the hallmark of a rare condition called Pantothenate Kinase-Associated Neurodegeneration (PKAN).

PKAN is a progressive neurological disorder that causes movement challenges, speech difficulties, and, in more severe cases, loss of mobility, vision, and even basic functions like swallowing. Because it is so rare, few doctors in the country specialize in it and diagnosis can be complex. While our daughter is currently progressing and showing a milder presentation, PKAN is unpredictable. Her care needs expert guidance.

Why We’re Asking for Help:

We’ve been referred to one of the nation’s leading PKAN specialists, located across the country at Oregon Health & Science University (OHSU). The clinic offers evaluations and treatment options that are not available anywhere near home. But this trip will involve:

In addition to helping our daughter, we also feel deeply called to give back.

A Path Toward a Cure And How You Can Help:

We want to help fund PKAN research that’s bringing real hope. Thanks to a remarkable donation of $1.2 million from The Loving Loic Foundation, the gene therapy project led by OHSU and UMass Chan is now moving forward through Phase III toxicology studies, a critical step before clinical trials can begin.

PKAN is uniquely suited for gene therapy due to its single-gene mutation, and trials may begin as early as 2026.

See more information here: Loving Loic Foundation

Donate directly to the OHSU PKAN Gene Therapy Fund here:

Loving Loic PKAN Gene Therapy Research Fund

We want to contribute a portion of this fundraiser toward this research effort — not only for our daughter, but for every child and family affected by PKAN.

How Funds Will Be Used:

Your support will help with:

Final Thoughts:

Every donation, no matter the size, brings us closer to hope:

We’ll keep you updated as we navigate this journey with love, courage, and determination. Thank you for being part of Gemma’s story.

With love and gratitude,

Alexandra and James