Group Moderator: Carl Christy
Email: carlchristy@gmail.com, or 541-821-5889 in Phoenix, Oregon, USA (Please Email directly to me to sign up with this group!)

Hypothalamic Hamartoma Information and Support Share Group. Rare brain tumor present since birth. Most common side effects include behavior outbursts, gelastic or laughing seizures, cognitive problems and early signs of puberty. As of March 25, 2005 over 240 HH members WorldWide. Hypothalamic Hamartoma Web Page address: http://www.hhugs.com

Group Moderator Quick Personal Information

My name is Carl Christy,

My daughter Lindsey (DOB April 9, 1988) HAD a 2.2 x 1.8 x 1.6cm Hypothalamic Hamartoma spanning from the brain stem to the tuber cinerium to the optic chiasm and to the hypothalamus, with a fairly broadbase attachment to the hypothalamus. It was widely accepted as inoperable due to its location and size. She had a seizure every 45 minutes or less since birth.

In May of 2000 this group discovered (through Craig Faulkner of Port Adelaide, Australia) Royal Childrens Hospital in Melbourne Australia who had pioneered a new technique that had helped or cured 4 HH children in a row. Craig's daughter Rebecca was surgery #5, at age 10, and the surgery was 100% effective! Since then over 150 more children have been cured or had significant help with this operation! Finally, There IS Help available!

My daughter Lindsey had surgery #26 on March 19, 2002 at Melbourne, and things went very well. Lindsey was able to receive a 100% tumor removal with no side effects. She has been seizure free since March 31st. Her cognition is now NORMAL, with no seizures. Her moods are now very moderate. She is totally off anticonvulsant medications. She is a new daughter!

Surgery has also begun in the UK and US for these tumors, with BNI in Phoenix, Arizona leading the way. Contact us for more information!