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Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease.
This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares how her experience as a physician shaped how she navigated her daughter’s care but didn’t necessarily make the whole process easier. And she vulnerably describes what it felt like to just never catch a break, and how those experiences have shaped the way she views life today.
This is one story episode you cannot miss, and a big shout out to our sponsor Functional Formularies who made this episode possible!
Links:
Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow Annie on Instagram @dranniekuo!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
By Madeline Cheney5
149149 ratings
Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease.
This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares how her experience as a physician shaped how she navigated her daughter’s care but didn’t necessarily make the whole process easier. And she vulnerably describes what it felt like to just never catch a break, and how those experiences have shaped the way she views life today.
This is one story episode you cannot miss, and a big shout out to our sponsor Functional Formularies who made this episode possible!
Links:
Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow Annie on Instagram @dranniekuo!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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