Rare Threads

Rare Threads

A Life with Prader-Willi Syndrome

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In Rare Threads: A Life with Prader-Willi Syndrome, Sebastiaan Van Nuissenburg shares the poignant journey of raising a child with two rare genetic conditions. From the overwhelming joy of birth to the stark realities of being the parent of the only child in the world to be born with Prader-Willi Syndrome UPD & Chromosome 16 microdeletion, Sebastiaan offers a raw and honest portrayal of the mental challenges, sacrifices, and triumphs encountered along the way. From infancy to the pivotal age of 10, readers are immersed in Sebastiaan's world as a parent, exploring effective strategies, pitfalls...