About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (2)

Apr 20, 2018 · White-Sutton syndrome in Brain & Nervous System

Erik is now 12 years old and even though that we knew that he was different from his birth, the diagnosis that he had a mutation in POGZ gen, was received in 2014. He was at that point the 3rd child identified by the Dutch genetic research group and for us, it was a relief that we knew what was causing his challenges.

Erik is a lovely and sociable boy, but needs a lot of structure and has troubles learning new and abstract topics. We are proud that he has learnt to read, write and calculate, even though it is not at a level of his peers. on the other site, he is very practical and always looking for opportunities to help others. He has an autism diagnosis. Very noticeable have been his eating problems, that had started directly after his birth. He is now eating normally, but has his preference and habits.

Looking forward to learn more!

Apr 19, 2018 · White-Sutton syndrome in Brain & Nervous System

Hi,

I am a mother form a 12-year old son in the Netherlands, who has a POGZ mutation.
I am not on Facebook, but would like to connect with more parents with children with the white-button syndrome.

Thank you, Rachel