Justin: I'm Justin Jolley.
Sarah: I'm Sarah Jolley. We live in Shelley and we have four kids.
Justin: Brielle is our third kid and she was diagnosed with a degenerative disease called, KIF1A and essentially she is slowly losing her ability to walk, talk and see. There's about 300 people in the world that are impacted by KAND. And she is currently the only one with her exact mutation to the KIF1A protein.
Sarah: Brielle loves to be outside. And her favorite thing to do is go climb the mountains. And of course her legs make it very difficult for her to climb the mountains. And so we went on a little family trip up to Wolverine area and it was a really steep hill and I was having a hard time walking it, everyone else was having a hard time walking it but she was very determined to walk it herself. And so she just kept going. She'd fall down, she'd get right back and say, "I'm okay." And just keep going again.
Justin: That's really her attitude with everything that she does. A lot of parents take small things for granted like their kids walking up the stairs, but she'll go to the bottom of our stairs and you'll hear her say, "Hey mom and dad come watch this." And she gets excited and walks up to the top of the stairs. And as parents, you can't... As parents you can't let those opportunities slip by to go watch.
Justin: A couple summers ago before COVID hit we were able to get together with all the other parents from around the world, in New York with the doctor that studies rare diseases. And as we were talking about the therapy that we do with our children, it came up with what types of therapy we do that our daughter gets to go and climb a rock wall that worked on her leg, strengthening that she plays on a big toy to work on other core muscles. And a family was just astounded that Idaho could have such an amazing therapy center.
Justin: Early on, we searched out doctors, we found therapists, we found Connections, and we're doing the things that we think we need to keep her as strong as she can. Brielle's amazing. She continues to achieve things we never thought were possible. The sky is still the limit when people say, "Oh they're one in a million." Brielle is literally one in 7 billion people and there is no limit.