Wheeler's War Against Batten Disease

To know the Stecker family is to love the Stecker family. Generous, kind, faith-filled, loyal, fun, thoughtful, inspiring, hardworking - these are just a handful of the many terms of endearment which friends and loved ones use to describe the Steckers.

Courtney, Judy and their son, Wheeler, reside in Northern Virginia with their sweet yellow labs, Sampson and Isabeau. Shortly after their wedding, Judy and Courtney began family planning. They discovered that they were both carriers of a rare genetic disease called Juvenile Batten Disease (CLN3), and carefully proceeded with IVF treatments. After years of failed attempts and miscarriages they were told by doctors that pregnancy was unlikely, so they decided to step back and focus on other elements of their life together and growing their family.  As fate would have it, they soon learned that they had conceived naturally and were expecting their miracle baby boy.

Knowing they were both carriers for CLN3, they decided to have Wheeler tested immediately after birth. At  just four weeks old, their nightmare came to life; Wheeler’s test was positive, and he would be affected. Wheeler is an anomaly as the youngest CLN3 patient to be diagnosed and, because of the early diagnosis, he is not yet symptomatic. In his first few weeks of life, Wheeler visited the NIH for a full-week assessment, including: lumbar puncture, MRI’s, EKG, EEG, EERG, retinal scans and more. He returns every six months for assessment. Thankfully, he passed his 18-month appointment in December 2020 with flying colors. Courtney and Judy aim to celebrate every precious day with sweet Wheeler, ensuring his happiness and well-being before the impacts of his debilitating disease begin. 

WHAT IS BATTEN’S CLN3?
CLN3, also called Juvenile Batten Disease, is an rare, fatal, inherited disorder that primarily affects the nervous system. Children with CLN3 disease develop normally, even excelling in school until ages 5–6 years, when progressive vision loss becomes noticeable. Shortly thereafter, parents report personality changes and behavioral issues. Typically, within 2–3 years after symptom onset, total vision loss occurs, and seizures begin, followed by declining speech and the progressive loss of motor coordination. Eventually, children become wheelchair-bound, bed-ridden, and pass away in their late teens to early twenties. Wheeler’s Warriors pray for medical advancements for comfort, care and, God-willing, a cure. 

HOW CAN WE SUPPORT?
Wheeler is now, and will always be, the Stecker's miracle baby. He is an absolute joy, a happy toddler who loves to play, laugh, eat, and sing, and he continues to hit all of the "typical" milestones such as running, mastering stairs and even starting to sing the alphabet. Though exactly when the disease will begin taking its toll is unknown, it is understood that the devastating disease will require extensive treatment and care in the future. Therefore, we need to start supporting and planning for Wheeler now.  We hope to support the family by covering  future medical costs, care, and quality of life expenses. 

On behalf of their friends and family, please keep a special place for the Steckers in your prayers and consider contributing today to become one of ‘Wheeler’s Warriors' - your support means the world to them as they continue along the Herculean journey ahead. **Please note that this site takes a percentage of donations, so should you wish to provide a large donation or host a fundraiser, please contact the Steckers directly at [email redacted] **

With Love,
Samantha, Carissa, & Krista