Riley's Fight

Hi, my name is Braxton. In 2015, Riley Harper was born, and I became an uncle. Not only did I become an uncle, but I also got a new little best friend, fellow photographer, co-writer for silly songs, a dog sitter, and a flower girl at my wedding. Having Riley come into my world was one of the best things to ever happen to me, and it began a sea change of seeing the world in a different, more positive and hopeful light. The first time I held her (I didn't know how to hold babies then) I was standing really rigid like a plank with my eyes leaking tears off the tip of my nose onto my shirt -- I was so proud and happy. I knew then I would do anything to help protect her and see her grow up.

A little over a month ago, Riley started having seizures. Naturally, we were all terrified but stayed hopeful that everything would be okay. Some tests were performed, and the news kept getting worse and worse. Our little Riley, only six years old, was diagnosed with CLN3 Batten disease. Batten is an extremely rare genetic disorder with the bleakest possible prognosis. Not only is this disease fatal, but its progression is brutal. Most children diagnosed with this disease do not live through their teenage years. We are completely devastated.

We have very few options. There's a glimmer of hope at the Texas Children's Hospital in Houston, where they are conducting early trials to combat Batten's Disease. It's our only shot. Riley's parents (My sister Jessica and her husband Colten) will begin regularly flying to Houston from Indiana in July to start treatment. Anyone who has ever been involved in prolonged medical treatments knows how expensive it is, not including this travel burden and the complications of trying to get time off from their jobs and everything else.

Please if you, or anyone you know can give to Riley and her family to help, then please do. Any amount will help them. Please, please, please share this info with anyone you can. We love and appreciate you! Thank you so much!