Floating Harbor Syndrome Support Group

Please contact us via e-mail at:  littleflock@yadtel.net   if you would like a sample newsletter or more information about our group which has over 50 member families.     Deana Swanson, the volunteer coodinator, has studied all medical journal articles on Floating Harbor Syndrome  extensively for the past 10 years, interviewed  geneticists and several specialists regarding Floating Harbor Syndrome,  is in contact with several FHS families including one of the oldest known FHS patients (age 35), and is willing to answer any questions via e-mail or phone if necessary.   She is also mom to Jesse, age 14, who has FHS.  

Sophie, 9, The Netherlands                                                 Chelsea, 19  USA 

                     Neeve,   England                                                         Andy, 18, USA

DISTINCT FACIAL FEATURES OF

Floating Harbor Syndrome:

 Note the wide, thin mouth and short philtrum (distance between nose and lips) 

Here is a picture of Jesse at his cousin's house.  Note the prominent nose.  She is 14 in this picture and he is 13.  

Size comparison, from left to right, Levi age 3,             Joseph age 10, and Jesse age 13.   

Again, for  a size comparison, Jesse with his sister Mary, age 6.  FHS children are often thin and have NO body fat with long thin limbs even though they are small and dwarfed.