All the research ( which isn't very much) indicates that there is no
effect on the life span of Floating Harbor children. As you are probably
finding out, it is primarily a condition that effects the speech and
communication center of the brain, and effects bone age which is always
significantly delayed. FHS kids tend to be short. Before it was classified,
doctors thought it was a type of dwarfism. That being said, there are often
other conditions that are associated with having FHS that could be more
important. The problem is that they are not consistent with everyone with
FHS. For example, my daughter Monica, has FHS and she had seizures, and can
hardly speak, is still in diapers at 6 years old, and is extremely easily
distracted. She has Celiac's Disease which about 50% of FHS children have.
Nevertheless, she is the most lovable child you'd ever meet. She has only
one kidney and an extra set of ribs. Another child has the same problem
speaking, has both kidneys, but has heart problems. Another has the speech
and shortness, but is so sensitive to light, he can only play at night or
with heavy sunglasses. Another still has autism on top of it. So, it is not
the FHS that threatens them so much as the other medical "anamolies" that
come with it. On our website www.monicagracefund.com we have a link to the
research papers that were conducted back in the 1970s as well as stories
from the parents of FHS kids.


To put your mind partly as ease, I know that some of the children from the
research back in the 1970's who would be in their 40's now, are alive and
well. What are her symptoms?



> -----Original Message-----
> From: southernbelljt [SMTP:jtolson@...]
> Sent: Thursday, October 23, 2003 11:59 AM
> To: floating_harbor_syndrome@yahoogroups.com
> Subject: [floating_harbor_syndrome] (unknown)
>
> Hi .MY daughter is 20 years old and she was just diganost with FHS
> afew years ago dose anyone have any idea how long this childern live
> Ive not heard yet if anyone knows any thing it would help
> Thank s
>
>
>
>
> To Post a message, send it to: floating_harbor_syndrome@eGroups.com
> To Unsubscribe, send a blank message to:
> floating_harbor_syndrome-unsubscribe@eGroups.com
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>