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The Change in Social Circles While Parenting a Child With a Disability

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Before my son was diagnosed with a rare genetic syndrome that ultimately meant he would have a learning disability for life, we were told that he may need surgery.

In very close succession we learned everything we could about craniosynostosis and hydrocephalus and braced ourselves and our friends for a possible, imminent operation.

Friends from near and far rallied round and we were inundated with offers of help during this difficult time. Further investigation established that surgery was not needed and my son became undiagnosed, he was a SWAN (syndrome without a name).

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