Josie & Cole's story

Sotos Syndrome

Josie Dye is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Josie is a radio host, TV personality, and rare disease mom who harnesses her platform to support other parents through the highs and lows of raising a child with a rare disease.

Toronto, ON

For years, I’ve been comfortable with words. Talking is the most important element of my career, and as a radio broadcaster I never feel lost for words. When my son was diagnosed with a rare disease — Sotos syndrome — for the first time in my life, I felt lost for words. The fear of what his future — our future — would look like. The way managing a rare disease stretches and strains a marriage, as if just raising children didn’t already do that enough. The guilt over how much of our time Cole takes, and how little energy we have left for his little brother Beau. The fact that none of us sleep when Cole doesn’t sleep. How hard that is. I didn’t feel safe sharing these things with anyone. I wasn’t sure anyone would understand.

Every day with Sotos is a surprise. It’s a loot bag of symptoms and you never know what’s going to appear next. It’s a life of questions. Will he always be in pain? Will he ever sleep again? Will he lose his mobility? How much cognitive impairment can we expect? And now he’s suddenly allergic to nuts? Is that even a Sotos thing?! It’s such a rare disease that it’s hard to get informed answers. There are only two or three doctors in the world who really understand this disease, and one of them is retiring. It’s easy to feel alone. And we did. For years.

One would assume that a diagnosis would be an end to hopes and dreams, but really it opened my eyes to how crucial advocacy and reflection were to my new role as mother and caregiver. I began by asking questions and checking my own emotions. If I was going to be successful in this new role, I needed to share and I needed to learn. I was never alone. One would think the isolation of a rare disease would push you out of the comfort zone of normal parenthood, but instead it opened doors for me to explore and help my son thrive.

You never really know how you’re going to feel about a situation until you’re in it, and boy was I in it. From anxiety to medical conditions that would just pop up to trying everything possible to help him fit in at school, this became my new full-time job. During the day I can be bubbly and engaging, and then my other face as concerned and worried mother takes over. But, in all honesty, it’s relative. While I sit and worry about the newest allergy my son has developed, my neighbours down the street are worrying about bullying or homework completion. Recently I looked into the science of all of this, and in my searches, I discovered that relativity actually means a lot more to me. We don’t know how fast this journey will be or where it will take us, but we do know that if we can enjoy the moment we’re in, the outlook becomes less bleak.

“I learned that talking about the hard stuff is both therapy and advocacy.”

I started sharing our journey, and I discovered that people understood. People will find a way to relate, and there are people who will support you no matter what. I learned that talking about the hard stuff is both therapy and advocacy. And now, with the Unmentionables podcast I make with Cynthia Loyst from The Social, talking about the things people never talk about is all I do. The episode we did on Cole had me fully breaking down.

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The more I shared, the more easily I appreciated the beautiful parts of this journey. Cole’s life has been so unbelievably challenging, but he keeps overcoming. I sometimes think if he didn’t have to work so hard to conquer this disability, he would conquer the world. At the same time, though, I see all the resilience, kindness, and strength Cole has and I wonder how much of that comes from Sotos itself. Certainly, if he didn’t have this disease, he wouldn’t be who he is.

If you had told me I was going to have a child with a rare disease before my pregnancy, I may have doubted my ability to take on this challenge. Now, I wouldn’t dream of a different life. Cole is thriving. He loves sports and music, and is the kindest, sweetest child. Nobody tells you that. I’ve met friends and parents with similar challenges, and have opened my life in a way that I never knew was possible. You are not alone. We all have adversity.”