Help Us Support Families Affected by Rare Genetic Disorders

Help Us Support Families Affected by Rare Genetic Disorders

Hello, we’re Sean and Kasie Appel. Our daughters, Alex and Zoe, were born with two extremely rare recessive DNA repair disorders: Cockayne Syndrome (CS) and Trichothiodystrophy (TTD).

Over the years, navigating these devastating conditions, we found invaluable support, understanding, and lifelong friendships through a UK-based charity organization called Amy and Friends. This community has been a vital part of our lives for more than 15 years.

Both of our beloved daughters have since passed due to complications from their conditions—Alex in 2018 and Zoe in 2021. Their lives, though far too short, were filled with love and the powerful connections we've made through this organization.

In 2024, we had the opportunity to attend the Amy and Friends annual conference. There, we met—many for the first time in person—other families we've grown close to over the years. The experience was profoundly healing. We found comfort, understanding, and the kind of shared grief that only those who have walked similar paths can truly understand.

Now, Amy and Friends has invited us to work alongside them in supporting other families facing these rare disorders. This meaningful work will require us to relocate to the United Kingdom—specifically, to Wales.

As you can imagine, an international move like this comes with significant costs. We’re reaching out to ask for your help in covering part of those expenses.

Any funds raised beyond our goal will be donated directly to Amy and Friends, to support the incredible work they continue to do for families like ours.

Thank you for taking the time to read our story. Your support means more than we can say.

With gratitude,

Sean and Kasie Appel