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Parenting Through Medical Complexity: A Kabuki Syndrome Guide
Parenting a child with Kabuki Syndrome often means managing complex medical needs alongside daily family life. With potential challenges ranging from heart conditions and feeding difficulties to immune system concerns and developmental delays, it’s easy to feel overwhelmed. But with careful planning, trusted care teams, and strong parent advocacy, families can create routines that support…
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22q11.2 Deletion Syndrome: Sibling Support and Medical Advocacy Tips
DiGeorge Syndrome, also known as 22q11.2 Deletion Syndrome, is a genetic condition caused by a small missing piece of chromosome 22. While it affects each child differently, many children with 22q face a mix of challenges including congenital heart defects, immune system issues, developmental delays, feeding difficulties, and behavioral or learning differences. Families caring for…
