ONCE UPON A GENE – EPISODE 251- Chasing Glimmers – From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum

Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, bravery and positivity. We’ll share inspiring stories from the community, life lessons we’ve learned and explore how glimmers light our way forward. Let’s chase those glimmers together!

EPISODE HIGHLIGHTS:

Effie & Katie welcome guest Megan Gillet. Her daughter, Nellie, endures terminal Infantile MLD. Megan shares her unique journey of embracing life in all its vibrant complexity. Megan opens up about living with grief, disability, parenting challenges, fashion passions, crafting pursuits, and her love of nature—without confining herself to a single niche. She explains what it means to let life unfold authentically, finding the courage to sidestep society’s labels and expectations.

Through candid conversation, Megan reveals her family’s determination to savor each moment, knowing that some of the hardest challenges lie ahead. It’s a powerful reminder that truly living isn’t about fitting into a box, but rather about spilling beyond its edges, leaving a trail of color, hope, and hard-won joy. Tune in for an inspiring glimpse into a life that refuses simple definitions—and learn how you, too, can find beauty and meaning in every shade of your own journey.
With love and gratitude,

Effie 💛

P.S. If this episode resonates, share it with another caregiver who might need it. We’re stronger when we remind each other we’re not alone.

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