Xia-Gibbs Society, Inc. is a not-for-profit corporation formed to provide support to and advocate for those with Xia-Gibbs Syndrome and their families and to foster hope for the future. The Society also aims to raise awareness about Xia-Gibbs Syndrome among the medical and general community and to support, fund, and promote scientific and medical research.
According to the US National Library of Medicine, "Xia-Gibbs syndrome is a neurological disorder characterized by weak muscle tone (hypotonia), mild to severe intellectual disability and delayed development. Expressive language skills (vocabulary and the production of speech) are particularly affected; children with this condition usually do not speak their first word, a milestone typically achieved within the first year, until age two or later, and some never learn to talk. Development of motor skills, such as crawling and walking, can also be delayed."
The reference is here
The NHS website does not appear to have a reference so raising awareness would seem to be a good idea.
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