On April 18, 2022 we got a call that would change our lives forever. Ryan had suffered two seizures in two months just out of the blue. Our healthy 6 year old girl was suddenly losing skills. A couple week after running an epilepsy genetic panel, I got a call from the geneticist. I could barely hear him over the hoard of athletes running past me on the track. He said some letters and a few really long words. CLN5. Neuronal ceroid lipofuscinoses. He should have told me not to Google it.

Batten Disease (subtype CLN5) is a terminal disease that typically begins in childhood and currently has no cure. There are less than 100 documented cases of CLN5 worldwide. Ryan is truly a unicorn.

Three years later and we are still in shock and watching our daughter slip away a little bit every day. Ryan does not realize what is happening. She laughs, sings, plays and loves life. She is so strong, so brave. We cherish her because one day Jesus will take her in his arms.

Funding research for CLN5 through BDSRA is the best way to give hope to future families affected by Batten. Because of this funding, great strides are being made in CLN5 research including a clinical trial in gene therapy.