Ben and Gabe
About Ben and Gabe
Ben (14) and Gabe (10) are energetic brothers who love spending time outside and staying active. Whether they are heading to the beach or jumping on the trampoline in their backyard, they always find ways to have fun. Ben is an avid game player, enjoying board games like chess and Monopoly, as well as card games like Phase 10. Gabe, on the other hand, is a baseball player who loves using his imagination through pretend sword fighting and dressing up as his favorite characters, including Ninja Turtles, Power Rangers, and Iron Man.
Diagnostic Journey
The family's journey began when Ben was first learning to walk and his aunt, a physical therapist, noticed he was having issues with his balance. Initially suspecting an inner ear issue, he was evaluated by a physical therapist who eventually recommended seeing a neurologist. At two years old, an MRI led to a diagnosis of Cerebral Palsy for Ben. However, four years later, Gabe was born and eventually began showing similar symptoms. Because it is highly unusual for two siblings to both have Cerebral Palsy, the boys underwent whole exome sequencing, which finally revealed their true diagnosis of ARSACS.
Message to the Community
Ben and Gabe’s parents want other families to know that their children are not defined by ARSACS. They encourage parents to keep pushing their kids to move and stay active, both for the long-term physical benefits and to ensure they never feel limited by their diagnosis. They also acknowledge that researching the condition can sometimes feel disheartening, overwhelming, and confusing. Because of this, they strongly recommend connecting with other families in similar situations, as shared experiences can provide invaluable comfort, support, and clarity when navigating the unknown.
Message to Those Unfamiliar with ARSACS
For those who are unfamiliar with the condition, the Cox family highlights that ARSACS has a wide range of symptoms that are highly variable from person to person. While it affects every single part of the boys' daily lives, it is not always a visible disability that others can immediately see. Because of this hidden aspect, they stress the importance of practicing patience and understanding. They ask that people offer grace in situations where it might not normally be given, as you never truly know what challenges someone might be facing behind the scenes.
Hopes for the Future of ARSACS
The family maintains a hopeful outlook for the future, especially for those who are newly diagnosed with the condition. Since there is currently a lack of widespread information about ARSACS, they intimately understand the difficulty of trying to educate yourself while simultaneously seeking a support system. Despite these challenges, they are greatly encouraged by the growing sense of community surrounding the disease. Their ultimate hope is that no family ever feels alone in their journey and that they can continue to connect with others who share similar experiences.