Photo Album
Living with Trisomy 13 - Patau's Syndrome

 Ásrún Vala Kristjánsdóttir

Born: April 14, 2003

  Húsavík, Iceland  

website: http://www.asrunvala.barnaland.is

 
 

 

Update 11-7-09

Hi all.

Ásrún Vala is now in school, in first grade and she loves it.

She has grown a lot both physically and mentally. She can say more difficult things and describes things better.

She has her own bedroom now and likes it a lot, although she wakes up a few times every night.

She is healthy and smiles a lot and still likes to tease others. She is a lovely girl and give us a lot.

Thanks,

Hermína and Kristján
herminah@simnet.is

- - -

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


 

 

Submitted 11-8-07

 

Have a child living with Trisomy 13??  We would love to add your child to our Album.
Click here to send us their information. (Please note in the subject area if this is a Trisomy 13 photo as I do not open attachments unless I am aware of the sender.)