Floating Harbor Syndrome
Extremely rare genetic condition known commonly as FHS. The condition was named this after a boy was seen at Boston Floating Hospital and in a patient at the Harbor General Hospital, California.
Floating-Harbor syndrome (FHS) is an extremely rare disorder characterized by short stature, delayed language skills, and a triangular shaped face. A broad nose, deep-set eyes and a wide mouth with thin lips give an affected individual a distinct appearance. The cause of this disorder is not known.
Abstract The Floating-Harbor syndrome is a growth retardation syndrome with delayed bone age, speech development, and typical facial features. The face is triangular with deep-set eyes, long eyelashes, bulbous nose, wide columella, short philtrum, and thin lips.
Conclusion The Floating Harbor syndrome is a growth deficiency syndrome characterized by proportionate short stature, characteristic face and delayed speech development. Inheritance is possibly autosomal dominant.
I have included links to medical extracts regarding this condition, however to me as a parent, medical terminology can be confusing. This is acceptable, as the medical professionals who write these journals/cases are highly educated within their fields.
We are fortunate that there is a large city near us here and there is a hospital specifically for sick children. There we have access to at least 2 consultants and also experts within the fields of genetics and rare syndromes.
When we look forward to the day that our child starts school, it is important that you can access as much information regarding FHS and work closely with your chosen school. Working together to ensure that their experience at school is extremely rewarding should be the goal of everyone involved.
I am fortunate that we have a small school, where there is a genuine interest in our daughter, rather than a large school where she would be ‘a number’ and not get the close attention that she needs. In our experience, local authorities are more interested in how much money that they would receive to assist her needs, also funding their own shortfalls in other areas.
Gathering information from other parents around the world, the following information is a generalisation of what to expect in an educational environment and this information will help teachers and learning assistants understand more of the expectations and needs of the child:
In terms of Educational planning, at the age of 3 most FHS children are just beginning to speak, doing sign language and using flash cards. Depending on the severity of FHS with your child , as some children have more symptoms than others. Remember every child is unique and some may have additional complications ie medical concerns or chromosonal abnormalities which are an addition to the FHS.
Speech Therapy should be explored as early as possible, however by the ages 3-4 their speech is difficult to understand, with pronunciation of the R, L and other letters very common. Some speech sounds lazy and sometimes slurred.
The children are delayed in their learning and also progress at a much slower pace than their peers. FHS children struggle iwth anything tedious (which to them is just about everything), especiall fine motor skills like writing. They can learn phonics and maths around 4-7 years of age and can learn to read around 6-9 years of age. Of course some children cannot read or do maths until much older, it depends on the individual.
They thrive on schedule and function best if they are told repeatedly will be different way head of time. They also seen to handle things best in small pieces, for instance, 5 mins of numbers, 5 of reading and 5 of phonics. They have a very short attention span at these tedious tasks. These schedules must be repeated every day or this will cause confusion and sometimes a state of regression in their learning. Obsessive behaviours are apparent at a very early age and can be easily confused with a form of autism.
Education professionals want to know : How do we deal with your child that has FHS? ‘We are teachers,not medical experts ‘they say! Here are some pointers to help get a system in place that can be followed to aid their development:
SCHEDULE