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OUR STORY

“Meet Luke! Our energetic, passionate, and kind hearted little boy. Luke was diagnosed with YWHAG genetic mutation in 2021. At that time, doctors provided us with little to no information on YWHAG gene mutation. The initial diagnosis was extremely daunting to us as so little was known about this newly discovered and rare genetic mutation. What we did know, was that Luke was suffering from unexplainable seizures and developmental delays. Along with that, Luke went through countless tests, scans, and traumatic hospital visits trying to find an answer to his complications. Fast forward to today and Luke is faced with challenges everyday that complicate his normal daily life. Despite the difficulties of living with a rare genetic mutation, Luke is able to find the good in every single day. Luke loves to meet new people, sing, dance, and swim. We are thankful to be able to connect and raise awareness with a very small community of other families affected by YWHAG gene mutation.”

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