Managing KS

Receiving a diagnosis of Kabuki syndrome will initially bring a whirlwind of medical appointments to determine if there are any physical issues that require attention.

During infancy, feeding challenges often become the priority. In addition, there may be cardiac or hip dislocation complications to resolve.

BrownThe early childhood years usually involve physical, occupational, speech and sensory integration therapies to facilitate the best possible outcomes. During school years parents aspire to implement the right mix of support and independence for their children.

Planning for transition to adulthood begins in the secondary years as the strengths of the individual with Kabuki are identified and opportunities in the community are researched. For many parents this may require creativity and a willingness to create new possibilities for their adult children.

Kabuki syndrome is still a relatively newly described syndrome and as such does not have a long history of individual follow-up. As our children mature and enter their adult years, a clearer picture will emerge as to their collective ability to experience self-directed lives.

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