A New Book Offers Hope to the Rare Community… And Beyond

By Gina DeMillo Wagner

As a child, Becky Tilley often felt like she didn’t fit in or wasn’t as successful as other kids in most academic areas… except for one. “When I was younger, and I was in special needs English, even then I really loved reading and writing so much,” she remembers. “It was my favorite subject, the only subject I liked actually.”

Becky recalls looking for any excuse to read and write, such as writing letters to her family. As life went on, however, she lost sight of that strength. “Now it’s come full circle,” she says, “because I’ve returned to writing in adulthood.”

It began when Becky started blogging about her experience with Koolen-de Vries, a genetic syndrome involving the 17th chromosome. She learned as an adult that she has Koolen-de Vries along with two of her children. Once the shock wore off, Becky says that the diagnosis was helpful for her to make peace with her past, and writing helped her process all the joys and challenges of the condition. “I love to share hope and inspiration through writing,” Becky says. The more she wrote about her experiences, the better she felt and the more she wanted to share.

Her new book, Thrive Rare: Embracing the Uniqueness Within, was born of her desire to spread hope. “Originally it was just going to be for the rare community,” Becky says. “But then I thought about the things I battled with, especially as a child: Not fitting in, being bullied, going through insecurity, feeling like you don’t belong in the world, worrying that you can’t achieve anything. I thought, these are things that everyone battles with in some shape or form. It’s a universal struggle that we all have.”

Her book offers a mix of personal stories, quotes, life experience, and advice to others who are facing any sort of adversity. “I thought, why not make it mainstream, speaking to the rare community while also raising awareness, and at the same time write things that the world can relate to?”

So that’s exactly what she did. Thrive Rare is packed full of encouragement for anyone who has ever felt like they don’t belong. We asked Becky to share some of her favorite takeaway messages from the book. Here are her top three:

1. “Leading by example is more powerful than just giving advice. Let your children witness the strength, assurance, and satisfaction that comes from being authentically yourself. Demonstrate, don’t just preach, the importance of embracing their unique qualities. Your shining light will inspire them to do the same.”

2. “A solid foundation of trust is crucial for establishing strong relationships, both with others and with yourself. Focus on nurturing self-trust and confidence in your own abilities and decisions.”

3. “Celebrating each and every accomplishment, no matter how small, adds joy to your journey and enriches your life.”

Want more inspiration? To purchase Becky’s book, click here. To read more about her journey with Koolen-de Vries, click here.