Emma’s Story

In the words of her mother, Melissa: This story is about my now 4 year old daughter Emma.  When she was about a year we had been noticing things didn’t come so easy for her.  She wasn’t as far developmentally as she should have been.  So we started at home therapy twice a week. Developmental […]

December 1, 2012 · Admin Andrew · 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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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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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 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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Nathaniel’s Story

Nathaniel Age 2 In the words of his mother, Trish: “After a perfect pregnancy, we nearly lost our first child when he came into this world.  After 4 hours of hard pushing, as well as several unsuccessful attempts with the forceps and the vacuum extractor, Nathaniel started having trouble.  (Who WOULDN’T, after all that?!)  He […]

April 29, 2011 · PTENLife · 4 Comments
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