THE OFFICIAL NEWSLETTER OF THE FHS SUPPORT GROUP
The medical study on Floating
Harbor syndrome is underway.
The families who were
interested in participating
should have already received
their packet of information and
a questionnaire to fill out. Two
support group
members (the
Fiorenzas and
Swansons) met
with the
geneticists at
JH in January
and were
impressed with their both their
interest in, and desire to learn
more about FHS.
At this point only FIVE (out of
the 27 of you who signed up to
participate) have returned the
survey. Please, please, please
complete them and send them
in. It is OK if you don’t know
or remember all the
information, just fill
out what you can and
send them to Johns
Hopkins.
If you are interested in
participating or are new
to the group and have
NOT received your packet please
contact us as soon as possible.
Please note: You must have an
official diagnosis from a geneticist.
Aurore, 12, Belgium
Aurore is 12 years old. She
was born on August 13, 1997.
She attends a special school,
has severe language delays,
and can’t read. She likes to
watch television, play on the
computer and play video
games.
FHS and Delays
Delays seems to be a common
word associated with FHS. Just
about everything is delayed;
speech, growth, height,
development, and the list goes on.
At first this really bothered me, but
I soon learned that if I was just
patient everything would happen
in its own good time. I think it
would be wise if we , as parents,
applied this to our children in
medical aspects as well. Take
puberty for instance. Instead of
worrying and giving our children
extra hormones and medicines,
what if we just patiently waited?
We did this with our son and here’s
what happened. He DID go
through puberty, although it was at
an age about 4-5 years later than
his brother. Later is fine with us--
better than trying to “artificially”
induce things that will happen in
their own time anyway.
Update on Jesse
Jesse is doing well and has
surprised us with how well he’s
adapted to his new school. Both
my husband and I are teachers at
his school, so in a way things
haven’t changed that much.
He just turned 16 and is doing 5th
grade language arts and 3rd grade
math, and 6th grade science and
social studies. He continues to
struggle with his spelling, but gets
enough of the letters correct so
that we can figure out what he is
writing. He is also working on two
different slide shows, one of our
farm we just moved away from to
our new jobs here in Pennsylvania
teaching, and the other of activities
around the school. He amazes me
with how much he knows about
the Keynote software. He often
helps us at home and at school
when we run into a computer
problem. (Photo-- Jesse at 15 with
brother Levi, 5)
Photo: Giovanni in Brazil
NEXT ISSUE We are currently
planning on publishing two issues a
year. If you have any updates, pictures
or stories about your FHS children
please submit them to the email below.
littleflock7@gmail.com
