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A Sister’s Perspective

Living with Tommy from a sister’s perspective. Hello, my name is Olivia, I am 13 years old, and I am Tommy’s older sister. When I was little, it felt like Tommy was always sick, and had all of my parents’ attention. They would be up with him during the night, and they would sit with […]

January 10, 2016 · Admin Andrew · Comments Closed
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Dutch website providing support to people with a PTEN mutation

Myrna Zandvoort-Zee and other volunteers have launched a website to support families and people with a PTEN mutation living in Holland and Belgium. http://pten.nl Several Dutch PTEN specialists have assisted Myrna in providing the site with insightful content.   Although written in Dutch, non-Dutch readers can view the content by using one of the translate […]

December 1, 2012 · PTENLife · No Comments
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Orrie’s Story

In the words of his mother, Angela: “My son, Orrie, is 4 years old. He was born in October of 2006 by C-section due to failure to progress. Good thing… because when we finally met Orrie, he was amazingly beautiful, with a head that was OFF the charts. Orrie was about 8 1/2 lbs and […]

April 30, 2011 · PTENLife · 10 Comments
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Briana’s Story

In the words of her mother, Kathleen: ”Briana was born by C-section on March 27, 2007 in Seattle, Washington at the University. She weighed 8lbs 02oz. Her head was large but nothing too alarming at the time. She did not open her eyes which at the time was fine. She did not eat much during […]

April 30, 2011 · PTENLife · No Comments
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