When I Overcame a Lifelong Fear to Advocate for My Daughter With Cystinosis


I never had an interest in public speaking. In fact, I avoided it as much as humanly possible. It always made me think of those times in high school when I had to present a project to the class. My heart beat so fast I could barely breathe and my voice trembled as I tried to rush through the presentation as fast as possible. So it’s no surprise that I never followed any paths that led towards public speaking in my post-secondary school years. Until my life took a new direction.

Since my daughter’s diagnosis almost three years ago, my goals and the way I live my life have dramatically changed. Cystinosis is such a rare disease that most people only hear of it because they know someone affected.

I aim to change that. Though there are only an estimated one 1 in 100,000 to 200,000 people worldwide living with cystinosis, it shouldn’t limit the amount of people we can educate. All we need are people willing to listen.

I began writing about our journey with cystinosis on my personal blog and got the bug for writing about it on other sites after The Mighty published a letter I wrote to cystinosis. I realized this could be the way I get cystinosis out there, so I began submitting to parenting sites. I was thrilled to be able to share my stories and spread some awareness to an audience who would have never found their way to my blog on their own.

One day I saw a casting call for the first Listen to Your Mother Vancouver show. A show that invited people to read their stories related to motherhood on stage — in front of a live audience. I knew it would be an incredible opportunity to advocate for my daughter and cystinosis, but I immediately dismissed it as something I simply would never be able to do.

But it stayed in my mind, tugging at my fear of public speaking and daring me to do it anyway. If there’s one thing I’ve learned from my daughter’s diagnosis, it’s that this life is fleeting. It’s too short to worry about silly things like what others might think of me. And it’s definitely too short to let my fear stop me from doing what I want, and certainly from doing things I hope will make a difference.

MIGHTY PARTNER RESOURCES

Choking back my fear and the rising urge to hide trembling under my bed covers, I booked myself into an audition spot and began rehearsing like crazy! I’d just written an essay I thought would be perfect. It talked generally about my motherhood journey and my dislike of the phrase, “as long as it’s healthy.” In my opinion it was universal while still a personal testament to my experience.

A couple months later I was surprised to learn the producers felt the same way! Somehow I managed to make it through my audition without my voice breaking, though I was pretty sure my heart was only seconds away from pushing right out of my chest, and then I was officially a cast member.

Amanda with the cast of Listen to Your Mother Vancouver
The cast of women speaking at LTYM Vancouver

On April 30th, 2016, I got on that stage with 12 other incredible women and bared my soul in front of almost 300 people. I told others how much my daughter meant to me and how her disease didn’t make her less than any “healthy” child. I fought back tears when I explained how much joy she brought us and how grateful I was to have her in my life. And I made it through, despite my lifelong fear of public speaking.

You can watch the video of my speech below:

At the end of the show I was in the crowd speaking with my friends and family who had come to support me when a woman I’d never met before introduced herself. She started with “hello” then immediately broke into tears. She began telling me about her daughter who had cystic fibrosis and that she completely understood how I felt. She thanked me for sharing my story and I was at such a loss for words that I gave her a hug and thanked her right back.

Amanda speaking about her daughter and cystinosis in Vancouver
Giving my speech at LTYM Vancouver

This show has been one of the most powerful experiences of my life. It started with my desire to raise awareness but ended with me growing as a person, conquering my fear and connecting with a stranger on a deeply profound level.

And I have my daughter — and ultimately cystinosis — to thank for it. Without them, I would have never even started writing and most certainly would not have gotten up on that stage. As difficult as cystinosis can be sometimes, it is now an integral part of our lives and I can’t help but be grateful for some of the lessons it has taught me.

You can read the full version of Amanda’s essay on Coffee + Crumbs.

Follow this  journey on Elsinosis.

JOIN THE CONVERSATION

Related to Cystinosis

Friends and family

What I Learned by Not Keeping Silent About My Daughter's Cystinosis

Alone, terrified and heartbroken — that’s how I felt when my daughter was diagnosed with cystinosis. I didn’t know what it was, had never even heard of it before, but this disease was inside my little girl. Wreaking havoc on her tiny body. It wasn’t yet officially confirmed, just a word casually dropped by the ophthalmologist [...]

6 Lessons I’d Like to Share With Parents New to Cystinosis

Shortly after my daughter was diagnosed with cystinosis, I was lying awake in bed one night with my mind full of thoughts and me desperately trying to silence them. Then an idea popped into my head. Maybe I should start a blog. I felt scared, alone, broken and hated the idea of anyone else feeling this [...]

Why Canada Needs Your Support On Rare Disease Day

I love someone rare. Anyone who’s ever followed my personal blog knows that. And there’s a good chance if you’re reading this, you, too, love someone rare. And that’s the ironic thing about rare diseases — they’re actually more common than you may think. In Canada, a disease is considered rare when it affects fewer than [...]

When My Son Wrote What He Really Thought About His Rare Disease

My son Chandler was diagnosed with cystinosis when he was just 10 months old. He is currently 10 years old. There have been many ups and downs along this journey, with many medication adjustments, hundreds of doctor’s appointments, several surgeries, many tears and many laughs. Cystinosis is a rare genetic metabolic disease. It causes an [...]