A video about the "no smile period" in my son's life. This is a video about the painful experiences of a father with a child suffering from Trisomy 13, otherwise known as Patau Syndrome.
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My son's name is Lyly. He was born was Full Trisomy 13 (see details on this below).
What is Trisomy 13?
(excerpt from https://medlineplus.gov/)
"Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year."
See all my Trisomy videos on my channel:
https://www.youtube.com/channel/UC2XGjChcEJzwebMbOkO5cbw
My Blog about Trisomy 13 & my son's life:
www.thetrisomylife.com
{{ Trisomy Parents, Carers & Interested parties - please visit www.livingwithtrisomy13.org
It is a wonderful facebook group full of caring, compassionate, and knowledgeable people with Trisomy 13 children. It is an absolutely invaluable resource that has helped me immensely. }}
Music: Kubbi - Formed by glaciers
(https://kubbimusic.com)
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#patau
#patausyndrome
#edwardssyndrome
#トリソミー