ONCE UPON A GENE - EPISODE 191

A Rare Collection - A Father's Day Special - Amidst the Storm

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. 

EPISODE HIGHLIGHTS

Jessica Fares

My dad is a fixer by nature. He's watching his grandson struggle with the debilitating aspects of SYNGAP1 and his daughter learning to navigate the heartbreak of being a rare disease parent. Since he can't fix it, he does everything in his power to make things better for both of us. My dad is the most involved grandparent I know, even advocating for his grandson's treatments. Without my dad, this storm of rare disease would be a whole lot darker and we appreciate what he brings to our family and lives. Happy father's day dad, and thank you.

Sierra Phillips

Having a child with a rare disease is a storm my husband and I never imagined we'd have to weather. The storm is all-consuming at times, but amidst the storm, my husband has been our anchor and beacon of hope. He's the exact person that I needed as my partner on this voyage and is truly the unsung hero of our story. I couldn't be more thankful or proud to have him as my husband and father to our children. Happy father's day Justin.

Margot LaFreniere

My husband is at the center of the storm with me, reassuring me and our daughter, supporting us and talking us through problems when we encounter them. He works tirelessly, and collaborates with pharmaceutical companies for better GSD1B treatments. He even ran a marathon this year for our foundation. He's incredible and his drive and passion is what has brought us so far- we're fortunate to have him at the center of our storm. 

Mariana Esteves

I'm privileged to testify to the special bond of a father and daughter. From the moment our daughter was born, my husband was a super dad, always there for her, loving and patient. Their relationship developed into something truly unique. Sadly, we're in the middle of a storm and the only certainty is that the storm will not slow down. My husband has researched and researched some more to provide his daughter the best explanations to overcome the limitations of her condition. 

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