We are Judy and Courtney Stecker, and we live in the Northern Virginia area with our almost four year old son, Wheeler, his new baby brother, Read, and our three yellow labs, Sampson, Isabeau and Maverick. We found out in 2015 that we were both carriers of a rare genetic disease called Juvenile Batten Disease (CLN3). After years of unsuccessful IVF rounds, including two miscarriages, and agreeing with our doctors that natural pregnancy was not in our future, we decided to step back, take a break, and focus on each other and our marriage. As fate would have it, about six months later we found out we were pregnant with our miracle baby. Knowing we were both carriers for CLN3 we decided to have Wheeler tested immediately at birth. A couple weeks later, at four weeks old, our nightmare came to life; Wheeler’s test was positive, and he was affected.
We learned very quickly that Wheeler was an anomaly. He was the youngest CLN3 patient to be diagnosed, and because of his early diagnosis, he was not yet symptomatic. Within two weeks we had Wheeler at NIH for a full-week assessment. At only 5 ½ weeks old he went through a lumbar puncture, two MRI’s, EKG, EEG, EERG, retinal scans and more. Because Wheeler is pre-symptomatic, the amazing team at NIH is monitoring him every six months.
Wheeler is now, and will always be, our miracle baby. He is a wonderfully happy boy, who loves playing, laughing, singing, eating, snuggling, and sharing everything with everyone (especially his pups). He reminds us every day what we are fighting for. We could not be more blessed by the love and outpouring of our BBDF family and encourage everyone to donate to help the amazing doctors, researchers, and staff looking for a cure.
Together we will “Battle Batten Disease and Find a Cure.” Please consider donating today and becoming one of ‘Wheeler’s Warriors’.