ONCE UPON A GENE- EPISODE #281: Making Memories: A Mom of a Daughter with Friedreich’s Ataxia on Last Steps, Make-A-Wish, and Not Letting the Future Steal the Day w/ Laurel Frost Coffey

Laurel on Amelia, Friedrich’s Ataxia, and Choosing Joy in the Face of ProgressionLaurel shares her family’s experience raising Amelia, who was diagnosed with Friedrich’s ataxia at age 8 after early signs showed up around age 5. This conversation covers the path to diagnosis, the emotional reality of progressive illness, and how Laurel stays present with Amelia while making memories now.We discuss Laurel’s perspective as a mom, the impact on Amelia’s brothers, the role of community, and the hope she sees in current research and clinical trials. Effie Parks and Laurel also talk openly about grief, joy, sibling dynamics, and what it means to keep moving forward when the future feels uncertain.Key topics

In this episode, Laurel introduces Amelia as a creative, funny, and spirited 10-year-old who lives with Friedrich’s ataxia and still brings a lot of joy into the family.

Laurel walks through the early signs that something was wrong, from leg pain and exhaustion on a family trip to France to frequent falls, clumsiness, and coordination issues at school.

She describes the diagnosis process: physical therapy noticing neurological symptoms like nystagmus, head tilt, scoliosis, and difficulty standing with eyes closed, followed by an ER visit and later genetic confirmation.

We discuss the genetic side of Friedrich’s ataxia, including FXN gene mutations, GAA repeat expansions, and why early-onset cases like Amelia’s tend to progress much faster.

Laurel shares the emotional weight of learning that both parents are carriers and that Amelia’s diagnosis is life shortening, which brought a deep grieving process for the future they expected.

The conversation explores grief in waves and how Laurel experiences it in “installments” as Amelia loses abilities, while still trying not to get stuck in future fear.

Laurel talks about staying present by focusing on Amelia herself, saying that time with her is the best therapy and the biggest source of joy.

Effie and Laurel compare notes on parenting through disability, including the pain of seeing other kids move freely and the challenge of not letting comparison take over.

They dig into one especially hard moment involving a denied disability pass for a Disney trip, which became a reminder that small logistical battles can hit harder than they seem.

Laurel describes how she tries to make memories now, including a hand and footprint art project for Amelia’s “last steps,” and why she’s pushing to travel while Ame