Episode 117

A Rare Collection - New Beginnings

Jan 13, 2022

23:01

Caregiver Support Genetics & Genomics Rare Disease

Episode Description

ONCE UPON A GENE - EPISODE 117

A Rare Collection - New Beginnings

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. In this episode, guests share their stories of new beginnings.

EPISODE HIGHLIGHTS

Leah Moore

In the spring, Leah and her family planted flowers in the garden, but only one flower grew. The single sunflower signified rebirth in the world, but also in the family. After the flower was damaged, someone surprisingly sent a new sunflower in the mail for the family to plant. The generous gift also fostered a realization about supportive friends and the meaning of new beginnings.

Katie Lloyd

Katie spent the prior year deep in the trenches of grief with no diagnosis for her son. She was overwhelmed and not coping well. The year was really hard with a raging pandemic that separated her from family and support. It wasn't long after her son finally received a diagnosis, that Katie was making friends with people in the rare disease community all across the world. With the new year, Katie spent time to process her emotions around what she had been through so she could let them go, moving forward, embracing a new beginning of hope for her family.

Sean Baumstark

Sean shares stories of starting over, including after a diagnosis of Friedreich Ataxia disease, which robs him of his ability to speak, write and walk. Through his experiences, it's apparent to Sean that things change, and that just as routine as the sun rises, new beginnings will come, but not always as you expect. But every new beginning is an opportunity to assess himself, what's important and how he wants to navigate change. What he makes of new beginnings is where the new happens, where discipline matters and where life gets exciting.

Angela Rohaidy

When you become a mom to a child with a genetic difference, you become several different people- the nurse, therapist, pharmacist and advocate. As a mom and caregiver, Angela's self care took a back seat to her daughter Eloise. This year is a new beginning with a focus on her daughter's needs, but also herself.

TUNE INTO THE ONCE UPON A GENE PODCAST

Spotify

https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7

Apple Podcasts

https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347

Stitcher

https://www.stitcher.com/podcast/once-upon-a-gene

Overcast

https://overcast.fm/itunes1485249347/once-upon-a-gene

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