Floating Harbor Syndrome

FHS rare genetic condition, comorbidity, short stature, delayed bone age, UK support group

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Staying Safe

With the Covid pandemic continuing world-wide, we all have to do what we believe is best for our family in keeping them safe.

Different countries have different instructions on staying safe when around people, so it is not a one fits all rule anywhere.

When it comes to Floating Harbor Syndrome, there is no current data available on whether your child is more susceptible to getting Covid or not, however given that this is a Developmental Delay, that has many complications, should alert the medical professionals to err on the side of caution and offer vaccinations to our children quickly.

One parent reports that they enquired about getting a vaccination for their FHS family member, to be told that the ‘condition’ has to be on the Government’s Medical List to be registered to receive their shot early.

The way to approach this, as FHS is so rare, is to contact your own family doctor, and ask them to intervene, requesting support for your child to get vaccination. It is because of the ‘unknown’ that should prompt urgent action.

Medical List from the CDC

Population Risk Assessment UK

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FHS child thinks being bullied is normal

One of our members reports that their child was bullied throughout Nursery and Primary School. The child had a formal diagnosis of Floating Harbor Syndrome at the age of 4, yet teachers would punish the child for not listening in class or not responding appropriately to instructions. The child in question also has an intellectual disability, a diagnosis of ADHD, amongst other complex needs –  specialised support was denied to the child throughout their schooling. Floating Harbor Syndrome was laughed at by professionals, all because of its name! Children threatened the child, verbally and emotionally bullied the child, and sadly, they were hit physically by other children in the playground and on the journey home. The child could not express their feelings to anyone for years, as they have social communication issues alongside their Learning Disability. The schools could not do anything, as the child was unable to recognise the people responsible, therefore washed their hands of the problems that continued for 8 years.

This all happened in mainstream education in Scotland.