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 11-8-07
Our names are Hermína and Kristján Ben. We live in Húsavík, Iceland. We have
four children, Heiđrún Dóra born 30th of May 1989, Sigrún Edda born 30th of
October 1992, Hólmar Ben born 27th 1998 and beautiful little girl, Ásrún
Vala, who was born 14th of April 2003.
When she was born, she had six
fingers on right hand. Her right eye there was a coloboma of the iris. When
Ásrún Vala was four months old, we took her to eye specialist and he told us
that she was blind on right eye. Our doctor sent us to Akureyri to see a
child specialist (Doctor). The specialist found nothing wrong, but wanted to
send us to Reykjavík for further examination.
We went the first 10 days of
November 2003. The 15th of November we went to hospital in Akureyri and the
extra finger was taken off. That went well. The specialists in Reykjavík,
called at the end of November asking us to come back in December.
When we
went there, they told us that she is missing a part of 11th chromosome and
has an extra part of the 13th chromosome, part of trisomy. She was sent to
physiotherapy, she even could not sit at the time. And she was also sent to
therapist to work on her fingers, her fingers are all bended. She also has a
sleeping disorder although she is on a medication, Amilin 75 mg., on each
night. She was sent to The State Diagnostic And Counseling Center and they
told us that she is well behind other children in maturity, both mind and
body. She has been diagnosed with ADHD (Attention Deficit Hyperactivity
Disorder) and some kind of autism spectrum.
Ásrún Vala is very happy child,
and her favorite thing to do is to tease others, and then she laughs and
laughs. We have a hot tub in the garden and she loves it.
We also have a dog
in the home, his name is Askur. She is very found of him. She is in school
from 8 – 4 pm. Our homepage is
http://www.asrunvala.barnaland.is and our email address is
herminah@simnet.is
and we loved to hear from you.
Blessings
Hermína and Kristján.
herminah@simnet.is
 
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Translation
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)