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Episode 31 of 56

31: The Story of Ryan

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station description Curated by a fellow special needs mom in the trenches, The Rare Life features Madel... read more
‎The Rare Life
Duration: 36:56
17-year-old Ryan can eat and eat and never feel full—but more than your average teenage boy. He has Prader-Willi syndrome, a rare genetic disorder that prevents satiety, the sensation of fullness after eating. His parents keep their kitchen pantry locked up to prevent him from consuming dangerous am
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17-year-old Ryan can eat and eat and never feel full—but more than your average teenage boy. He has Prader-Willi syndrome, a rare genetic disorder that prevents satiety, the sensation of fullness after eating. His parents keep their kitchen pantry locked up to prevent him from consuming dangerous amounts of food in search for the satisfaction that will never come. As his mom Jessica Patay relates in the episode, it’s the ultimate combination because Prader -Willi syndrome also causes obsessive behaviors and a slow metabolism. In their home, food is no joke.
Jessica shares her view on cyclical grief in special needs parenthood, as well as things she has learned and gained from her challenges with Ryan.
One of those gains is the community and nonprofit organization We Are Brave Together, which offers workshops, support groups, and retreats for special needs moms. Jessica has put her heart into spreading the message that we are not alone.

Follow WABT on Instagram here: https://www.instagram.com/wearebravetogether/
Join the WABT Community: https://www.wearebravetogether.com/connect.html
Check out BetterHelp: https://www.betterhelp.com/therarelife

For pictures, my written thoughts, comments, and more, visit my website: Ep. 31: The story of Ryan | The Rare Life (therarelifepodcast.com)
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