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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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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

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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