1 hr

21. How a Rare Genetic Syndrome Diagnosis Fueled Inspiration - with Becky Tilley Parents Connecting

    • Society & Culture

In this episode we talk with Becky Tilley, a UK-based mom who is spreading the words of kindness and inspiration after being diagnosed with a rare genetic syndrome called Koolen-de Vries.

Becky grew up feeling different, but had no idea until after the birth of her second child that she was not only a carrier of this syndrome but that two of her kids would go on to also be diagnosed. Getting the diagnosis when she was an adult gave her a unique perspective as she wasn't defined by this condition growing up. Instead of letting parent guilt and the negative spiral get in the way - she harnessed positivity and ended up writing and publishing a book called Thrive Rare: Embracing the Uniqueness Within.

Listen in as Becky opens up and shares her story of her childhood that included being bullied and having difficulties with academics and work life to where she is today having authored a book and continuing to be an inspiration to others that have been diagnosed with rare genetic syndromes.

About the Guest


Becky Tilley is a passionate advocate for embracing uniqueness and finding strength in adversity. Her personal journey with rare diagnoses, as well as her experiences as a parent, inspired her to share her story with others. Through her writing, she hopes to inspire individuals to embrace their own journeys and celebrate their unique paths.


Follow her at the below links:


@ThriveRare Instagram
Thrive Rare YouTube Channel
Thrive Rare Facebook Page
X (formerly Twitter)
UK KDVS Support Group
Mamas Heart International Facebook Support Group



Please don't forget to support the Parents Connecting Podcast!


SUBSCRIBE and RATE the show. And don't forget to hit that Follow button!
Join the online private ⁠Facebook Group ⁠Parents Connecting⁠ 
Follow me on Instagram ⁠⁠@Rashida.ParentsConnecting⁠⁠
Tag a friend on your social media who you might want to hear this episode and keep the connecting going!
Share / Forward the episode that you think might need to hear this!

In this episode we talk with Becky Tilley, a UK-based mom who is spreading the words of kindness and inspiration after being diagnosed with a rare genetic syndrome called Koolen-de Vries.

Becky grew up feeling different, but had no idea until after the birth of her second child that she was not only a carrier of this syndrome but that two of her kids would go on to also be diagnosed. Getting the diagnosis when she was an adult gave her a unique perspective as she wasn't defined by this condition growing up. Instead of letting parent guilt and the negative spiral get in the way - she harnessed positivity and ended up writing and publishing a book called Thrive Rare: Embracing the Uniqueness Within.

Listen in as Becky opens up and shares her story of her childhood that included being bullied and having difficulties with academics and work life to where she is today having authored a book and continuing to be an inspiration to others that have been diagnosed with rare genetic syndromes.

About the Guest


Becky Tilley is a passionate advocate for embracing uniqueness and finding strength in adversity. Her personal journey with rare diagnoses, as well as her experiences as a parent, inspired her to share her story with others. Through her writing, she hopes to inspire individuals to embrace their own journeys and celebrate their unique paths.


Follow her at the below links:


@ThriveRare Instagram
Thrive Rare YouTube Channel
Thrive Rare Facebook Page
X (formerly Twitter)
UK KDVS Support Group
Mamas Heart International Facebook Support Group



Please don't forget to support the Parents Connecting Podcast!


SUBSCRIBE and RATE the show. And don't forget to hit that Follow button!
Join the online private ⁠Facebook Group ⁠Parents Connecting⁠ 
Follow me on Instagram ⁠⁠@Rashida.ParentsConnecting⁠⁠
Tag a friend on your social media who you might want to hear this episode and keep the connecting going!
Share / Forward the episode that you think might need to hear this!

1 hr

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