The Price Family

Meet Hannah

Hannah Price is 26 years old, and if you had to describe her in two words, her parents say it would be: Energizer Bunny. She lights up any room she enters, and is absolutely treasured by her mom, dad, and ‘little’ brother, Sam. When asked what lights Hannah up, the answer was simple… Food! Bread is a particular favourite, and ice cream is must. She loves anything in motion, and music has become a recent joy... she'll cross a room just to get closer to a song she loves.

Like so many KCNH1/TBS/ZLS families, Joel and Susan spent years searching for answers, ruling out condition after condition, with very little support along the way. It wasn't until Hannah was 15, and they were just about ready to give up the search for an answer, that they finally got one. And with that diagnosis came a community that has become like a family.

Life with Hannah

When the Price family goes somewhere for a day, it looks like they're going for a week. Hannah is the star, and everyone else is the entourage. They live life to the fullest and are always prepared for what life throws at them. They've taken Hannah to Hawaii, where she went parasailing, which she loved, and snorkeling off a boat, a decision they won't repeat. They even added a sidecar to the motorcycle so she can ride along. If a family event doesn't include Hannah, the Price family doesn't go. No question.

A medication combination in recent years has brought Hannah more peace, slowing the world down for her in a way the whole family has felt. A once overstimulating world has shifted for her. Now Hannah will often be found playing quietly in her room or relaxing on the couch, a stillness that once felt out of reach.

Priceless Moments

What Hannah’s family cherishes most, is her smile. And every once in a while, something will make her full on laugh, really laugh. It only lasts a couple of minutes before it's gone, but in those moments, the whole world stops.

Susan and Joel know what a gift it is for Hannah to have a younger brother who sees his sister so clearly, and the bond they share is beautiful to witness. When Sam comes home from LA, Hannah doesn't always respond to his voice right away. But the moment she touches his hands... that's when she knows he's back.

"I've never asked why. I've always just wanted to see what Hannah is... not what she isn't."

Their Village

Faith and community have been the backbone of the family's support system. Their church has walked alongside them in ways that are hard to put into words. And their Christian Motorcycle Association family has become an extension of home for Hannah, people who know her and love her just as she is. In a journey that can often feel isolating, having that kind of steady, unconditional presence has meant everything.

What This Community Means

When Susan talked about what the KCNH1 community means to her, it was with warmth in her heart and tears in her eyes. In those early days, the online community was a lifeline, building relationships that became like family. And she’s continuing to make new connections as the group grows. With so many new families finding their way in, being part of it fulfills something she has carried for a long time... a quiet wish to be there for the newly diagnosed, to take their hand and show them that there is so much good ahead. For Joel, who is more of a face-to-face person, the LA meetup brought it all to life in a different way… finally being in the same room as other families, looking them in the eye. It's something he'll never forget.