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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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Troy’s Story

In the words of his mother, Erica: So it’s a long story but it’s ours.  Thanks for reading and providing an outlet for other parents like us to post our struggle and ultimately our happy ending. At my 20 week ultrasound appointment the nurse was measuring my baby and asked me if I was sure […]

December 1, 2012 · PTENLife · 2 Comments
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Dural Arteriovenous Malformation in a Child with BRRS

http://www.ajnr.org/cgi/reprint/27/9/1927.pdf

May 1, 2011 · PTENLife · No Comments
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Medical Story

Looking back, Tommy’s delivery was long and difficult. When he finally arrived, the doctor was surprised by his high birth weight (he weighed 10 lbs 5 oz). When he was handed to me, I was struck by his beautiful eyes and his forehead — it looked different to me. He was jaundiced, but keeping him […]

April 30, 2011 · PTENLife · 3 Comments
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About Tommy

About Tommy ********************************************************************************* NEW CANCER SCREENING RECOMMENDATIONS FOR PATIENTS WITH PTEN MUTATION PUBLISHED 1/12 (SEE TABLE 4) BY THE AMERICAN ASSOCIATION FOR CANCER RESEARCH ********************************************************************************* Tommy Dabinett  is a sweet and happy 13-year old boy with a full head of black hair and big blue eyes.  When he was born in 2004 we were so happy to be […]

April 30, 2011 · PTENLife · 36 Comments
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Zack’s Story

In the words of his mother, Irene: “Zack was born at 37 1/2 weeks and weighting in at 8 lbs 7 oz. He had jaundice and the doctor was checking his sugar because he was big for an early baby. I was on bed rest for a month because I was going into early labor. […]

April 29, 2011 · PTENLife · 3 Comments
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