Hello! We are Brown Family. We have two sweet boys, Bennett and Connor. Bennett is 8 and is the best big brother. He is kind, caring, helping, and can make any room smile with his sense of humor. Connor is 5 and he loves all kinds of trucks, cars, books, movies, dinos, and super heros! Connor loves to swim and go to ninja class. He is sweet, funny, kind, and can make any room light up with his smile and laugh! 

Connor started to have seizures at age 3. At age 3.5 years old Connor was diagnosed with an ultra rare disease, Batten Disease CLN2, which affects the brain and nervous system. Symptoms appear between 2 and 4 years old and include : seizures, loss of vision, motor regression, cognitive decline, clumsiness, and behavioral changes. There is no cure. Connor receives treatment to slow this horrible disease down. We travel to RUSH every other week for a 5 hour brain infusion. Recently, Connor had started monthly eye injections. He receives an injection in one eye. This should help him keep and maintain his vision!  We continue to HOPE for a cure!






We have asked that any funds raised through this page be used to support Batten families with the help of the BDSRA Foundation. We have been lucky enough to receive help through fund, and we would love to help other families like ours. This includes programs like the Batten Family Help Fund, Equipment Exchange Program, Annual Family Conference stipends, and many more! If you would like to make a donation to Support Programs alongside the Brown Family please donate!


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We have been busy in our community spreading awareness and hope!