Who is Vegard

Vegard is a 7 year old boy from Norway.

From infancy Vegard has suffered from Infantile Spasms/West Syndrome. The fight for finding out why has been long and hard - but finally, after a five year struggle we got the diagnosis.

Vegard has a rare genetic disorder in Exon 8 in the CDKL5 gene.
So far Vegard is the only boy registered in the world with a disorder in Exon 8.

There are still quite few boys registered with this disorder in general, but as the knowledge of the disorder spreads, the number of boys are steadily increasing.

One can learn more of the CDKL5 disorder on this web page: http://www.cdkl5.com/

There is also a support group: http://uk.groups.yahoo.com/group/CDKL5/


This is Vegard's story.

Fixed hip

It did take some time, but finally, the day came - Vegard's right hip was put back where it belongs, after 1 1/2 year of being luxated.

Friday 7th of January 2011, we were admitted to the National Hospital in Oslo, and the following Monday - the 10th, the surgery was done. It all went well, and after five days, we were transfered to our local hospital in Drammen, where we stayed for one week before going home.

Now Vegard is home - with both legs in a cast - spred wide. It's a bit of a hassle, but he is doing well, and is very patient. We get daily visits from his day care centre, and his physiotherapist comes twice a week to work with him.

Vegard will be like this till the first of March, then the cask hopefully will come off, and life goes back to normal again.

Waking up in the intensive care unit.

Now in the same room as mum, and feeling a bit better.

Finally at home again - and Pus - Best Buddy and High Protector is happy.