We are Judy and Courtney Stecker, and we live in the Northern Virginia area with our son, Wheeler, and our two yellow labs, Sampson and Isabeau. We found out five years ago that we were both carriers of a rare genetic disease called Juvenile Batten Disease (CLN3). After years of unsuccessful IVF 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 the early diagnosis, he is not yet symptomatic. Within two weeks we had Wheeler at NIH for a full-week assessment, including: lumbar puncture, two MRI’s, EKG, EEG, EERG, and retinal scans. He returned at six months old for another assessment and is scheduled for his one-year assessment in June 2020.
Wheeler is now, and will always be, our miracle baby. He’s a wonderfully happy baby, who loves playing, crawling, laughing, eating, and snuggling. He reminds us everyday 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.’
Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. The Charles ‘Wheeler’ Stecker Fund is partnering with BBDF to find a cure for juvenile Batten disease for the Wheeler and hundreds of other children.
The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!
Charles ‘Wheeler’ Stecker Research Fund has a raised a total of: