Matty was born healthy and happy to eager parents and a proud big brother who couldn’t wait to begin their adventures together.
For the first few years of his life, all appeared well. The family enjoyed playing and reading to Matty and watching him grow into a fun-loving toddler. By age three, however, things unfortunately started to change.
Matty began experiencing seizures, which was shortly followed by a misdiagnosis of epilepsy. After months of numerous trips to the hospital, and a challenging “breakthrough” seizure, Matty’s parents began to look for more answers.
After a long journey of specialists and genetic testing, it was at age four Matty was finally diagnosed with CLN2 disease. CLN2 is an ultra-rare and rapidly progressing pediatric brain disorder, and one form of Batten’s disease. The disease can cause blindness, loss of motor skills, and loss of the ability to speak. Only an estimated 20 children in the United States born per year are affected with CLN2 disease – less than one in a million Americans.
“We immediately went into research mode and just started googling anything we could find that would give us some hope for Matty,” said Matty’s mother Michelle.
Shortly after diagnosis, the family engaged The Batten Disease Support and Research Association (BDSRA) – an organization dedicated to funding research, providing family support services, advancing education, raising awareness, and advocating for legislative action. BDSRA also helps connect families impacted by Batten disease with one another.
Soon after engaging BDSRA, Matty began receiving care at Nationwide Children’s Hospital in Columbus, OH. The family also began meeting with others impacted by CLN2 disease for the first time. Hearing and learning about their unique journeys while experiencing their own was invaluable to the O’Learys.
“We will always be grateful for the families that came before us and paved the way.”