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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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 · 2 Comments
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Meeting with Dr Charis Eng at the Cleveland Clinic

In the summer of 2010, we went to see Dr Charis Eng at the Cleveland Clinic. The National Institute of Health gave us her name when Tommy’s grandfather contacted them to see what else we could learn about Bannayan Riley Ruvalcaba Syndrome. Dr. Eng discovered the PTEN gene mutation responsible for Tommy’s syndrome. This was […]

April 30, 2011 · PTENLife · No Comments
Tags: , , , , ,  · Posted in: Congestion, Constipation, Lung Mucous Plugs, Medical, PTEN Life, PTEN Mutation, Respiratory Issues, Skin Rash, tonsillectomy

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 11-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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