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        Questions About Jeune's Syndrome?

SAWYER BENSON shown here when he was 10 years old and in the 4th grade. He's an excellent reader, has earned a high red belt in tae kwon do and is becoming quite a good rock drummer. By the time these pictures were taken, he was preparing for his 20th VEPTR surgery in December, 2010.

  • Our GI doctor advised us to send our daughter to occupational therapy daily or multiple times daily if necessary until she starts eating.
  • I have met other Jeunes sufferers and we have all had mild ongoing problems with stomachs including only being able to eat little and often.
  • I have many muscular problems which I have been told are degenerative and probably related to my Jeunes.
Sawyer Benson, then 4, was excited about going to Legoland...