Meet Eva Eva has SCN2A, a rare disorder that, like ours, comes from a change in an ion-channel gene... a sodium channel in her case, rather than the potassium channel encoded by KCNH1. Eva’s early years will feel familiar to many in our community: seizures from the first days of life, developmental delays, vision impairment, dystonia, and long stretches in hospital. The Start of Her Journey In late 2023, Eva became one of the first children in the world to receive an experime

Meet Theo Theo is four years old, and his parents describe him simply as a super fun little guy. Always in a good mood. Always laughing. He has a way of making everyone around him laugh too. He is deeply drawn to water in every form... a bucket, a lake, a pool... and will happily keep busy with nothing more than that. He doesn't quite grasp that he can't breathe underwater, which keeps his parents close and watchful, but it speaks to a joy that runs right through him. Theo is

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 l