hi my name is Pauline I have a son who has Sotos Syndrome he is 34 years old I would like to be of help to anyone who has been diagnosed with sotos as I have 34 years of experience of the condition (I would have liked to have had advice when Ian was diagnosed).It would also be good to talk to other parents as we all need to know we are not alone
You may wish to join Unique (rarechromo.org) as there are some diagnosed with sotos registered.
As well as being mum to a 22 year old with a chromosome 15 duplication I also work part time for Unique.
Hi Mazzy M I would love to join let me know how to Pauline
Please email me
firstname.lastname@example.org and I will explain all.
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