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i'm sorry, this is Caseycandraw. i'm like 5 years late in this reply.
AS far as i know she was definitely diagnosed w/ fryns but i could be
wrong. that's what her charts and all of her doctors/staff said. she
attended perkins school in boston. she had diaphragmatic hernia at
birth, had intestines in a lung at birth, scoliosis (rod in back at
12), clouded cornea where she could only see shadows in right eye, and
left eye was (i dont know the medical terminology) very very very tiny
and unusable. low low muscle tone in legs, absense of corpus collosum,
had to have a gtube, problem with dumping sugars, 90% deaf, broad
bridge and a larger mouth but no cleft pallate or lip.
she could count small numbers and i dont know what her "grade level"
was but she was very smart, understood schedules and used sign
language tho not a great many signs. i dont know if she's still living
but last i checked she was a year ago. she'd be ~17 now.


--- In fryns_syndrome@yahoogroups.com, kdglow@... wrote:
>
> That surprises me.  Dr. Fryns told me in an email that the oldest
person
> alive with fryns died at age 9.  What is her mental and physical
capabilities?
>
> Thank you,
> Kerry
>