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.

Two 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.

Wear your shirts proudly for our Ryan. Tell everyone who asks about her smile.

Thank you for loving our girl.