Safe
Victoria, France, age 14 Harbor
Thank youvery much for the last issue. It is
.
nice to have news about the other children
.
Victoria is doing very well. She is 144 cm
.
high inches and weighs 36 kgs
( )
pounds She goes to school in a special
( ).
class . She reads, not very well, but she
.
understands whatever she reads She
.
goes to school 4 days a week. She starts
.
from the house at 700 am and returns at
: . .
500 pm. She loves football soccer ,
: . . ( )
cars,bicycles and her cat,“Charley” .
.
She has no health problems,only some
eye and teeth troubles. We go to the
.
dentist twice a year.
.
Victoria loves to laugh,she has a sense
of humor . She loves her sisters It is
. .
difficult for her during the week because her
first sister NelaniegoestoNautestothe
university, and her second sister goes to
LaRoche for high school. They come back
.
to the house at the end of the week
.
Victoria misses them the 5 days
during the
week . This year she wants to play
.
basketball. She watches the NBA on the
.
television. Best regards, Danielle SUJEVIC
Jordan, age 9, Canada
Jordan is doing really well. He has a
wonderful Educational
Assistant and team around him that truly
care about him. He is loved by
his classmates and schoolmates. He is
working very hard in school these
days. He is very committed to learning
what his friends are learning.
Jordan played indoor and outdoor hockey
in Carp last season. He usually
plays on the same team as his little
brother. We are very proud of how
well he is doing.
He is an avid NHL Senator's hockey fan.
He will watch any game, at any
hour of the day. He played soccer during
the summer and his team won the A
Final at the end of the season. He's never
afraid to get in the game. I
guess he has accepted that he is always
the smallest one on the team!
We are still using sign language with
him, although, the speech has really
improved this year.
Take care and thank you for doing the
newsletters. I really look forward
to them. Kim
Update on Connor, UK age 3
Connor is doing well and started his special
needs school recently. It went really well
and he has settled in better than we
thought. Although the school doe not have
a uniform we have made one for him, that
way he can
associate the uniform with getting ready for
school.
Really wanted to thank you for the
suggestion about introducing the Down
Syndrome diet. Connor now has rice milk,
flavoured with a bit of milk shake powder.
We have introduced vitamins, amino acids
and a different food diet. The results have
been incredible, no more nasal
congestion, mucus, running nose, dribbling
from the mouth. He has a better diet and
appears to be more hungry, his sleep is
getting a bit better and seems more alert.
Funny thing is when we told the audiologist
who conducted a routine hearing test
last week, she was amazed how the diet
effected Connor. He has had no ear
infections, no excess wax, mucus, cold,
running noses and the list goes on.
I guess people have to try it to see for them
selves, but hey, we are proof
that it works.
Connor seems more relaxed and less
bothered by things around him. Also he is
more vocal,
something we have put down to the
vitamins and amino liquids. Everything we
have given him as part of the diet is
considered as “brain food” in England.
Sophie, The Netherlands
55 Member Families
Austrailia 1 Brazil 1
Canada 4 France 1 Greece 1
Ireland 2 Israel 1 Italy 1
The Netherlands 2 Portugal 1
Scotland 1
USA 21 UK 17
Age & Growth Hormone Therapy
The two questions I get asked most often are
about the expected age for adults with Floating
Harbor, and about Growth Hormone. I will try
and answer these two questions here by giving
as many facts as we have.
First of all, we were recently contacted by a
family in Scotland. They have a man in the
family with FHS who is 52. He lives in his
own flat (apartment) with some assistance and
works washing dishes in a pub. Previously,
the oldest known FHS patients were in their
late 30s, so this was very interesting
information indeed. We will try and get an
article about him for the next issue.
Secondly, here are some facts about growth
hormone. FHS adults end up between 4 feet 6
inches and 5 feet 2 inches tall. ( 137-157 cm.)
Even after years of the shots they don't get any
taller than the above statistics. They WILL
have what the doctors call an “initial growth
spurt” and grow at a faster rate on the shots,
but the end results are still the same, they just
get there faster. Children whose parents are
taller (around 6 feet or 180 cm) will end up on
the taller end of the FHS spectrun (5 feet or
152 cm), while children whose parents are
shorter (around 5 feet or 152 cm) will end up
on the shorter end of the FHS height spectrum
(4 feet 6 inches or 137 cm). There have also
been members of our group who have
discontinued the shots because of undesirable
“side effects” which were not a normal part of
FHS The parents thought perhaps these were
side effects from the growth hormone therapy.
There have been parents who were happy with
the growth that their children achieved while
on the GH, but again, medical research cannot
prove that it makes the children any taller in
the end.
