Our daughter, Emberlyn (Emmy), is one of the bravest people we know.

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Her journey began with seizures that came without warning and without answers.

After months at one local children’s hospital with no answers and little guidance, we

decided it was time to try CHRISTUS Children’s. What followed were months of

hospital stays, testing, and uncertainty as we searched for the why behind what our

little girl was experiencing. This children’s hospital refused to stop at symptoms.

Because of their commitment to going deeper, Emmy received a rare genetic

diagnosis. KBG syndrome - a turning point that gave our family clarity, direction,

and hope.

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KBG syndrome is a rare genetic disorder caused by a mutation in the ANKRD11

gene. It can affect the brain and nervous system, skeletal development, hearing,

digestion, and learning, often leading to seizures and developmental delays. Because symptoms vary widely from child to child, diagnosing KBG frequently requires specialized testing and coordinated care from multiple specialists. We feel eternally grateful to have found all the needed specialists at CHRISTUS.

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Today, Emmy is cared for by an extraordinary team at CHRISTUS Children’s, including pediatrics, neurology, neurosurgery, ENT, GI, hematology and developmental specialists - all working together to treat her as a whole childe, not just individual conditions. Most recently, this team discovered that Emmy has a tethered spinal cord, and she will soon undergo spinal surgery to protect her future mobility and quality of life.

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What makes CHRISTUS Children’s stand apart from any other local children’s hospital is the collaborative specialty care, and the compassionate teams who listen when answers are hard to find. They focused on uncovering the root cause - and building a long-term plan tailored to Emmy’s needs.

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In 2025, Emmy spent a combined total of over 40 days in the hospital. One of the greatest gifts this hospital has given during our visits is its Child Life program. From quick blood draws to long hospital stays, testing, and overwhelming procedures, Child Life specialists helped turn fear into understanding and anxiety into confidence. They met Emmy at her level - explaining procedures in ways she could understand, offering comfort through play, and helping her feel safe in an environment that can be scary for any child. Programs like Child Life are made possible through donor support, and their impact reaches far beyond a single moment, shaping how children experience care during some of the hardest days of their lives.

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This hospital didn’t just treat our daughter - they walked with our family through some of our hardest days and continue to stand beside Emmy as she moves forward. Your generosity helps families like ours find answers, access life-changing care, and face the future with hope. We are endlessly grateful to everyone who makes this level of care possible.

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