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Vegard's life with CDKL5

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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. Now Vegard is hom...

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Vegard's life with CDKL5 | vegardslife.blogspot.com Reviews

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Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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. Now Vegard is hom...

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Vegard's life with CDKL5 | vegardslife.blogspot.com Reviews

https://vegardslife.blogspot.com

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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. Now Vegard is hom...

INTERNAL PAGES

vegardslife.blogspot.com

1

Vegard's life with CDKL5: Brotherly Love

http://vegardslife.blogspot.com/2010/04/brotherly-love.html

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Tuesday, April 27, 2010. We wished so dearly. To have two children. We dreamt of the joy. They would have in each other. We wished for two boys. And our wish came true. First there was Big brother -. Two years later – Little brother. Life doesn’t always go as one plan. Little brother will never run -. Romping around with his big brother. As we had seen in our dreams. Still – on good days -. Big brother comes -.

2

Vegard's life with CDKL5: January 2011

http://vegardslife.blogspot.com/2011_01_01_archive.html

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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. Now Vegard is hom...

3

Vegard's life with CDKL5: Who is Vegard

http://vegardslife.blogspot.com/2011/01/who-is-vegard.html

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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.

4

Vegard's life with CDKL5: Standing at attention

http://vegardslife.blogspot.com/2010/04/standing-at-attention.html

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Sunday, April 25, 2010. It vary a lot wether he feels up to standing or not. At the best, he can stand for up to one hour, some days he will start crying after five minutes. April 2006 - Vegard is being plastered for fitting a "standing shell" -. Impressing the orthopedic technician by sleeping through the whole thing. April 2006 - Vegard in his "standing shell" for the very first time. View my complete profile.

5

Vegard's life with CDKL5: Fixed hip

http://vegardslife.blogspot.com/2011/01/fixed-hip.html

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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. 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.

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cdkl5 - Geschichten anderer Betroffener

http://cdkl5.de.tl/Geschichten-anderer-Betroffener.htm

Auch diese Kinder leiden an einer Mutation im CDKL5 Gen:. Vegard - http:/ vegardslife.blogspot.com/. Asha, Bree and Glyn. Http:/ ourcdkl5journey.blogspot.com/. Http:/ www.myspace.com/ourlittleangel2006. Http:/ leahrosebarnes.blogspot.com/. Http:/ alexisamber.blogspot.com/. Http:/ cdklklc5.blogspot.com/. Http:/ www.freewebs.com/hannahlouisesmith. Http:/ www.jadescdkl5journey.blogspot.com. Http:/ www.izabellabaker.com. Http:/ www.mialoudon.co.uk. Http:/ gunnersstory.blogspot.com/.

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Vegard's life with CDKL5

Vegard's life with CDKL5. A blog about Vegard's journey towards the CDKL5 disorder diagnosis. Monday, January 31, 2011. 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. Now Vegard is hom...

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