Almost all of us in the world of rare and orphan have one of these stories. For me, it was my father and my family, of course. But, almost without exception, everyone I know who is leading an effort to improve the lives of people with rare or orphan conditions has had a catalytic moment with a patient.
Maybe it was during clinical trials or at a patient advocacy meetup or even your neighbor, but, at some point, you got to know someone as a person. You learned about their humanity, their aspirations, their families. And that is what led you to working with those populations. And why you listen to a podcast like this one.
If, perhaps, you have forgotten what that moment was like for you, we have something very special for you in this episode. This is the story of Jessica Ballinger’s family. And this story will remind you what your first time was like. Because this episode is the up-front, raw, and unfiltered voice of a parent in the midst of developing the best possible futures for all her kids – including a toddler with a rare condition.
You may know Jessica or, at least, you may know about various members of her family. Nearly each one of them has achieved their own level of notoriety on YouTube or comedy shows. But, today, we are getting a rare, behind-the-scenes look at what it takes to be a mother of a child with a rare condition. Pay close attention to her courageous point-of-view and how she is guiding her family forward one day at a time.
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More About Jessica
Jessica Ballinger and her husband, Chris Ballinger, run a family and lifestyle channel on YouTube. They create content across multiple platforms, including Instagram, TikTok, and Twitter. They homeschool their five children, ages 1-13, together and love to share their parenting experiences. They also recently started a podcast called, “Let’s Talk About What We Learned Today”, where they discuss family matters and relationships.
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