The Rare Spotlight: Becky Tilley shines a light on finding strength in adversity

Dec 8, 2023

This week’s blog was written by Becky Tilley.

Becky is a passionate advocate for finding strength when facing adversity by celebrating the uniqueness of living with a rare disease. 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 path.

Throughout my life I’ve often felt like an outsider, whether at school, work, or at church as a child.

Being behind my peers made me an easy target for bullies, and loneliness was my constant companion.

However, I held on to an inner drive to make something meaningful out of my life.

Photo of Josiah as a baby

Pursuing Dreams

I initially pursued acting, earning a diploma in performing arts despite early learning difficulties.
Doubts crept in, and a pivotal moment came when my acting tutor questioned my commitment to
the career. It wasn’t the path I truly wanted.

Transitioning to nursery school work, I provided vital support to children. Still, I felt like an outsider
among colleagues. Determined not to settle, I became a childminder, building a successful career
from home. Yet, an unfulfilled yearning persisted.

Discovering the Power of Words

Writing became a solace, and my encouraging texts and social media posts received praise. Despite a
childhood passion for writing, I lacked inspiration to write a book.

A Shocking Turn of Events

In March 2020, my son, Joshua, was born with hypotonia, a rare condition. His 34-day hospital stay and a long search for a diagnosis led to a shocking discovery: both Joshua and I shared a rare chromosome disorder called Koolen-de Vries syndrome.

Anxiety gripped me as I was pregnant with my daughter, Avary, facing a 50% chance she would share the diagnosis.

Photo of Joshia with his mum, dad, sibling and dogs.
Photo of Joshia with his mum, dad, sibling and dogs.

Embracing Uniqueness and Becoming an Inspiration

With support, I transformed our diagnoses into a reason for celebration, realising our uniqueness
was a gift.

My journey led me to become a guest blogger and speaker on both rare and mainstream podcasts.

I self-published my book, “Thrive Rare” and created communities for individuals and families affected by rare disorders.

Through Instagram, I encouraged everyone to celebrate what made them different.

My life story shifted from that of an outsider to one of inspiration. I turned what once felt like my
greatest flaw into a passion and purpose — to inspire the world to embrace their uniqueness.

Labels, diagnoses, and others’ opinions don’t define us. I encourage you to courageously embrace your
uniqueness and live a life that fills you with pride.

By doing so, you’ll not only find your own path but also inspire others to do the same.

Embracing your uniqueness is the key to a fulfilling and authentic life.

Thank you, Becky for sharing your guest blog with us. We hope you enjoyed reading it!

If you’d like to write a guest blog for Beacon, find out more about sharing your story.

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