Our daughter Phoebe was diagnosed in February of last year with a rare and life-altering condition called Alexander disease, a progressive neurological disorder caused by a mutation in the GFAP gene. This disease affects the brain’s support cells and can lead to challenges with mobility, coordination, speech, and overall development. The diagnosis was heartbreaking—but we believe God has a purpose in every detail of her life, and we are committed to doing everything we can to give her the best possible chance.

Nearly a year into this journey, Phoebe has largely plateaued developmentally. We are thankful that the supplement and supportive care plan we’ve put in place appears to be helping stabilize her and prevent further decline. However, meaningful improvement is unlikely without a treatment that directly targets the underlying disease process.

For the past several months, we have been pursuing exosome-based supportive therapy, administered under the care of a trusted provider. While this therapy does not correct the genetic mutation, it has been part of our effort to reduce inflammation, support brain health, and preserve function. We plan to continue this therapy as long as it remains helpful and appropriate.

At the same time, we are now actively pursuing access to zilganersen, an investigational medication developed by Ionis Pharmaceuticals that is designed to target the genetic mechanism responsible for Alexander disease. This medication is not yet FDA-approved and is being made available only through a limited Expanded Access Program coordinated through Children’s Hospital of Philadelphia (CHOP). The process involves regulatory approvals, baseline testing, and careful medical oversight, and participation is not guaranteed. We are currently completing required evaluations and preparing as best we can while awaiting next steps.

Because Alexander disease has no approved cure, we are pursuing every responsible avenue that may help Phoebe—supportive, investigational, or potentially disease-modifying—while remaining grounded, prayerful, and medically guided.

All funds raised through this campaign will go toward any and all efforts to improve Phoebe’s quality of life or slow disease progression, including but not limited to:

• supportive therapies and supplements

• investigational or expanded-access medications

• medical testing and evaluations

• travel and lodging related to specialized care

• unforeseen medical expenses connected to her treatment journey

We believe in a miracle-working God—and whether that miracle comes through medical research, compassionate community, or quiet faithfulness in the waiting, we are trusting Him each step of the way.

If you feel led to give, share, or pray, thank you for walking alongside us. Your support means more than we can put into words.

With gratitude and hope,

Rob & Ashley Caudill