The Newsletter of the
Floating Harbor Syndrome Support Group
July 2008 Issue # 18


Connor, UK age 3
Connor is 3 years old and 86.6 cm
tall (2 feet 10 inches), weighing 11.9 kg.
(26 pounds). He has a broad forehead,
slightly low hairline with a hairy back
and shoulders. Prior to birth, Connor
failed to grow in the last 6 months and
when born spent time in a special care
unit. In the first 9 months he failed to
gain weight and was very hard to feed--
milk was syringed to him.
Connor has lovely long eyelashes and
deep set eyes, a cute button nose and
cheeky smile. He has hypermobile
joints in particular his hands and wrists.


He has a dimple at the base of his spine.
Connor has delayed motor and language
ability. He understands a lot but is unable
to speak, and gets frustrated. The family
can understand his needs, but to most
others they think he is younger than his
age.
Odd and hyperkinetic behaviour is a
real adventure for the rest of the family.
He seems to have endless energy.
We as a family are learning makaton
sign language to help, and pictures to aid
recongnition. A pictorial time line shows
Conner his routine for each day so he can
associate what is happening. We are
waiting for speech therapy for him which
is hoped will help.
In addition to FHS Connor suffers with
sensory integration, he has poor sense of
body position, touch, and movement. We
have to feed him food that is very
textured, and let him play with soft, hard,
just to awaken his senses.
We are getting help, however at the
same time want to be involved with
everyone and everything.

Robin, Germany
Robin was born on October 26, 2001
and now he's 1,58 Meter high (small) (5
foot 2 inches) and weighs 16,8
kilograms (37 pounds).
In the Summer he goes to a special
primary school because he has language
problems (he speaks few words). He's
Delayed mentally and physically.
Robin is a very lively child and has a
very good memory. He loves to play
video games. We parents must make
sure that he doesn't do this too much.
We would like his language to
improve and have tried a speech
therapist. We as parents are using
with parturiton (sign?) language and
many pictures to communicate.
We look forward to more contact
through this support group.
Yours sincerely, Family Grochola
Aisling in Ireland
Many thanks for the information you
sent me regarding FHS. It was most
useful. I will certainly be getting some
copies to give to Aisling's teachers.
We attended Prof. Andrew Greene,
head of Genetics for the whole
country, and he said there were only
about 3 cases in Ireland he was aware
of. He diagnosed Aisling with FHS, but
gave no follow up. And because so little
is known about it, I find it very hard to
find information, so finding you was a
Godsend!
Aisling has no medical problems.
She has tested negative for coeliac
twice, although she does exhibit similar
symptoms. Her heart is fine, no
murmurs or underlying conditions. We
do notice that if she gets cold, her lips
and fingernails go blue. That initially
got me worried about her heart, but we
have since realised that it is because
she has practically no body fat! We are
taking a family holiday to Florida in May
and have requested pool heat in the
villa, because of Aisling!
She is an extremely active,
affectionate, intelligent little girl. She
warms to everyone she meets, and
shows no fear around strangers, which
can be worrying. She is now 6yrs 7
months, 110cms (3 feet, 7 inches) and
weighs 35 lbs.(15.8 kilograms).
Regards and happy Summer to you all.
Gillian Kelly, Ireland

More Pictures ! ........
Jasmine, Italy
I have seen that in this journal
there are many tips. Anyway, I have
noted that there has not been reported
any information about teeth care.
I would like to inform you about
teeth care in these children affected
with Floating Harbor Syndrome.
They need to bruth their teeth at
least 5 minutes every meal with a tooth
brush as soon as they are old enough.
A doctor has told me to use flour in
dependence of the age.
My daughter has so many holes in
the teeth albeit she follows an healthy
diet (without sweets, cakes and junky
food in general).
I’d like to receive a copy of this
journal by postal address.
Schmidt Katia, Italy
Isabel (center), UK

Isabel, now 9 years old, is a delightfully
happy girl and a real joy to everyone that
knows her. The FHS diagnosis was only
confirmed a year ago and came as a relief
to us rather than a shock. Until this time
every medical professional she saw was
mystified about her little use of speech
and small stature. She had undergone many
tests and all had found no explanation.
As parents, we were getting very
frustrated in regard to her education.
Isabel's comprehension was considered by
others as very low because she did not
communicate very much. Now with an FHS
diagnosis everyone at her school can
appreciate that she can understand well
beyond what she can put into words. She
is capable of far more than they had
previously thought.
Within the last year, her speech has
improved appreciably and she is
growing at a steady rate, keeping up the
height of the tallest FHS children of a
similar age. We go from week to week
seeing her make small but appreciable
advances and enjoy very minute with her.

Update on Rhett Berniers, USA
Hello, This is Rhett Berniers mom,
Michele. I hope everyone is doing
GREAT! Rhett is loving the BEACH here
in Maine. Only 4 1/2 more days of
school. Then of course, off to summer
school. He is doing great, except for
his behavior is getting worse. Not sure
if it is the other kids in Public schools
rubbing off onto him with there
behavioral issues or if this is just part
of the course.
I am writing for a couple of reasons:
#1. I would certainly love to here
from other families that just want to
share some info or have questions, ect.
They can contact me at:
mshellymom@hotmail.com.
#2. Is there any way of knowing
how growth hormone shots have worked
on other FHS children. The doctors
here in Maine asked me to try to see if
any kids are really benefiting from the
shots? and the side affect if any?
Please have parents email me if possible
we are wondering if we should stop
them. And how about any special
vitamins that would benefit Rhett? as
he doesn't eat all that well....I do give
him a multivitamin but anything to
benefit him would be great..

hugs and kisses to all
thanks so much.. Michele Bernier


Birth Defects Center
Study Update
For those of you who have signed
up to participate in the study with
the above two hospital genetic
departments, thank you!
We received e-mails from both
of the doctors in charge and they
are in the process of finalizing the
questionnaire. This will be e-mailed
to you (or sent via regular post if we
do not have your e-mail address) as
soon as they have contacted me
regarding this.
Thanks for your patience-- I am
eagerly awaiting this too.
If you have any other questions
or would like to sign up if you
haven't yet please let Deana know as
soon as possible. Contact
information is below.
Floating Harbor Syndrome Support Group

mmmmmmmmmmmmmmmmmmmm
Special Thanks to the
Connor Robinson Family in
the UK for sponsoring this
issue....
THANK YOU !
mmmmmmmmmmmmmmmmmmmm
Trial-a-Bike
This is a “trail-a-bike” made by the Adams
bicycle company. It attaches to a regular bicycle
as a sort of “third wheel”. After using this for
over a year, our son was finally able to learn to
balance enough to ride a regular 2-wheel bike on his
own with no training wheels when he was around 12.
New Members
I was making some copies of old
newsletters for a family and noted that
the first newsletter went out to just
10 families.
We are now up to 60 member in 17
different countries! We've done some
growing in the last 9 years haven't we?
Current Number and Location of
Member Families:
America – 24
England/United Kingdom – 16
Canada – 3
Ireland – 2
The Netherlands – 2 Puerto Rico – 1
Greece – 1 Germany – 1
Mexico – 1 Israel – 1
Australia – 2 Italy – 1
France – 1 South Africa – 1
New Zealand – 1 Brazil – 1
Scotland – 1
Total: 60 Families :-)
That being said, may it be noted that
postage here has gone WAY up, and
that it will cost almost $2 each to mail
the international newsletters out,
around $100 just for postage, not to
mention all my printer cartridges and
paper. If I haven't heard from you in
awhile please contact me and let me
know that you are still interested in
receiving these newsletters. OR that
you would like to receive them via e-
mail, or sponsor an issue.
Also, a donation is always appreciated
and can now be done online through
www.paypal.com Our e-mail address for
paypal is : littleflock@yadtel.net
.

Please e-mail any pictures or updates for
the Nov. issue to the above e-mail
address as well. Have a great summer!