Eleven years ago, we were given a diagnosis that changed the trajectory of our lives. We were handed a small piece of paper with information from the medical literature. At the time, there were only seven known cases published. I remember the loneliness of that day. The confusion. The sudden void that opened beneath us when we realized there was no roadmap, no community waiting for us, no one who could really tell us what the future might hold. I feel an incredible amount of

This is what can happen when a community truly cares about making sure everyone has a place. For so many children with disabilities, participation often comes with an explanation. We explain what they need, what they can do, why an accommodation matters, or why they deserve the opportunity to be included in the first place. But on this field, Yara doesn't have to explain her worth or prove that she belongs. She puts on her uniform, joins her team, hears people cheer for her,

What if we stopped asking, “How do we fix this child?” and started asking, “How do we support them to live a full life?” For many years, disability was viewed primarily through a deficit lens. What’s delayed? What’s wrong? What skills need to be fixed? The F-Words (developed by the team at CanChild) shift the conversation toward what truly matters. Function: How can this child participate meaningfully in everyday life? Family: What matters most to this family, and how can we

I keep seeing posts from caregivers of children with disabilities saying they hope they outlive their child by 10 seconds. Just long enough to know their child won’t have to exist in this world without them. And if that sounds heartbreaking to you… imagine carrying the kind of fear that makes that feel comforting. Because these caregivers are not just parents. They are the case managers, nurses, advocates, teachers, therapists, interpreters, protectors, and safe places all wr

Your child's sibling isn't a supporting character in their disability story. They're the co-author. We see it all the time in our communities and even in well-meaning advice. The sibling is the helper, the brave little soldier, the one who is always 'so good' with their brother or sister. And they are all of those things. But that's not the whole story. When I say they're the co-author, I mean their life, their identity, and their experiences are being written right alongside

Last year, I spent my birthday at Seattle Children’s Hospital. Not celebrating with cake or presents, but watching Yara become the first patient there to receive a potential treatment for Jordan’s Syndrome as part of the clinical trial. I had spent the previous decade helping make that moment possible: working alongside scientists, clinicians, researchers, industry partners, and hundreds of families. Building partnerships. Opening doors. Raising funds. Pushing forward when th