Floating Harbor Syndrome Support Group

P.O. Box 774
Terre Hill, PA 17581
ph: 254-721-8184
littleflock7@gmail.com

Welcome!

Latest News!

The 2015 Issue of our newsletter, SAFE HARBOR, is now available to member families. If you have not received yours via email, please email us and we will have one sent to you.

Also, the latest article on the discovery of the FHS "gene" is available by contacting the FHS Support Group. Many thanks to Dr. Townsend and the laboratory in Canada for all their hard work. Because of this study, a new test is available to geneticists to diagnose Floating Harbor using a blood test. For more information on the article or testing, please contact the FHS Support Group via the "Contact Us" tab to the left.

Identical FHS Twins! Hayden and Ryan, age 36, in Australia

Connor, at age 3

Connor, at age 10

Victoria, 14

Jesse, 18

For translation to other languages: http://babelfish.altavista.com/

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Welcome to the Floating Harbor Support Group web page! We have over 50 member families from 12 different countries, all with children who have Floating Harbor Syndrome. For more pictures of children and adults with Floating Harbor Syndrome click on the "Services" tab on the upper left part of the page. For more about the group go to the "About Us" tab above.

Floating Harbor Syndrome is a rare genetic disorder that was named for the first two identified patients who were seen at Boston Floating Hospital and Harbor General Hospital in California. While a more extensive list can be found below, the main characteristics of this syndrome are:
*short stature
*delayed bone growth
*delay in expressive language

*distinct facial features.

The exact cause of Floating Harbor Syndrome is not known, and only around 20 cases have been identified in medical journals and literature. More information can be obtained by contacting:

Floating Harbor Syndrome Support Group

P.O. Box 774

Terre Hill, PA 17581 USA

littleflock7@gmail.com

Rhett, 7

MAJOR FEATURES OF FLOATING HARBOR SYNDROME

*Short Stature (very low percentiles, off the charts eventually)
*Delayed Bone Growth (in a bone age x-ray for instance, a 7 year old could have the bone age of a 3 year old)
*Delay in Expressive Language (understands, but has trouble speaking, 18 month olds usually only say 2-5 words like "mama, dada, baba" etc.)
*Distinct facial features (apparent by 3-4 years of age, broad nose, wide mouth, thin lips, deep set eyes and small, triangular-shaped face for more pictures of FHS children click on the "SERVICES" tab)
*Intolerance to the sun/bright lights

OTHER POSSIBLE MANIFESTATIONS OF FHS

***(not all children will have these)

*low birth weight (below the 3rd percentile)
*prenatal growth retardation
*feeding difficulties
*odd and hyperkinetic behavior
*clubbed ends of fingers
*excessive body hair
*long eyelashes
*dental abnormalities
*thin lips
*delayed learning ability
*Celiac sprue (gluten intolerance)
*additional thumb
*sacral dimple (additional dimple around the tail bone area)
*constipation
*pulmonary stenosis (narrowing of a ventricle)
*hypospadius (low-placed opening at the end of penis)
*short or absent filtrum (space between nose and lip)
*small deepset nails/claws
*dysplastic hip
*ectopic/supernumerary kidneys
*high-pitched voice
*cataracts
*broad &/or flared nostrils

What We Do

We offer a newsletter published 3-4 times a year with articles by other families with Floating Harbor children and adults, phone consultations, and e-mail support for questions and concerns regarding FHS. We also have medical journal articles available if more information is desired.

WHAT TO DO NOW
1. If you do not already have a diagnosis from a geneticist it would be advised that you see one to get a definite diagnosis. As there is no "treatment" per se for Floating Harbor Syndrome, it is not wise to assume that this is what your child has and miss any treatment for another disorder that your child may truly have.

2. The only real "treatment" is to fix the symptoms if warranted. For instance, if your child has dental problems or cataracts you could have those things surgically corrected.

3. The use of sign language has greatly helped some parents whose children have Floating Harbor Syndrome. Several simple, inexpensive books are available at the book store or library. Just begin by looking up words while you are eating or playing, for instance "cereal" or "truck". By adding words slowly your child's vocabulary will grow, and it is a great joy to be able to finally communicate with your child. OR, cut out magazine pictures of children sleeping, eating, playing, drinking, etc. and glue them to cardboard for your child to point to what he or she wants.

4. Speech therapy has helped when the children are over three years old. Tutoring in reading or other subjects helpful when school-age. (See #9 for more information on this topic.)

5. Use of hat and dark sunglasses when in the car or going outside for those who are sensitive to sunlight.

6. Make sure your child is getting as many calories as possible (a snack at night is helpful) , lots of good nutrious foods and vitamins, and plenty of rest.

7. Let your child know everthing that is going to happen and when it will happen ahead of time. Most FHS children do NOT like when plans or things change and they aren't informed about it ahead of time.

8. Keep a good bedtime routine and make sure they get enough sleep. Try running a fan on low for background noise and try to keep things low-key (nothing to interest them) around the house for about an hour after they go to bed. If they do stay up late and are cranky, naps work wonders the next day.

9. Request the FHS Support Group's packet for teachers, educators and therapists. Pass them on to anyone who assists your child.

10. Contact the Floating Harbor Support Group for more information, pictures of kids with Floating Harbor and medical articles regarding this syndrome.

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P.O. Box 774
Terre Hill, PA 17581
ph: 254-721-8184
littleflock7@gmail.com