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
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PTENLife · 
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Tags: Adenoidectomy, BRRS, Cowdens Syndrome, Intussusception, Macrocephaly, polyps, PTEN Mutation, Respiratory Issues, Sleep Apnea, Sleep Issues, Tonsillectomy, Vein of Galen Aneurysm · Posted in:
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
Tags: Adenoidectomy, Birth Weight, BRRS, Congestion, Constipation, Diet, Dry Skin, External Hydrocephalus, Eye Ducts, Failure to Thrive, Growths and Lesions, Jaundice, Low Muscle Tone, Lung Mucous Plugs, Lymphangiomas, Macrocephaly, Medical Story, pigmented penis, Respiratory Issues, Skin Rash, Tonsillectomy · Posted in:
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: Congestion, Constipation, Lung Mucous Plugs, Respiratory Issues, Skin Rash, Tonsillectomy · 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
Tags: Acral Keratoses, Arteriovenous Malformations, Autism, Birth Weight, Bowel Resection, BRRS, Constipation, Cowdens Syndrome, Eye Issues, Growths and Lesions, lipoma, Macrocephaly, Mental Retardation, pigmented penis, PTEN Life, Respiratory Issues, Swollen Optic Nerve, Thyroid Issue, Tonsillectomy · Posted in:
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
Tags: Birth Weight, BRRS, Constipation, Cowdens Syndrome, developmental delays, Growths and Lesions, Hernia, Jaundice, Low Muscle Tone, Macrocephaly, PTEN Mutation, Respiratory Issues, seizures · Posted in: