Jaden's Story

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Jaden's Story

Jaden Is a 9 Year Old Boy With A Rare Genetic Condition Called 1p36.3 Deletion Syndrome.

This is a chromosomal disorder caused by the deletion of a band of DNA along the short arm of chromosome 1. Chromosome 1 is the largest human chromosome and represents about 8 percent of the total DNA in human cells. The "p" refers to  the "petite" (short) arm of the chromosome. "36" stands for the location of the deletion along the chromosome.  It is estimated that the syndrome occurs in one of every 5,000 to 10,000 births.

Jaden is globally delayed and so cannot walk, talk or feed himself fully.  He suffers from epilepsy and also has various other medical conditions such as an enlarged aorta, severe reflux and scoliosis. Parts of his brain remain deficient in myelin which is the electrically insulating substance that coats the nerves of the brain in order for them to pass electical information.

Jaden attends Nursery Road State Special School in Queensland and is part of the Xavier Special Education unit where he partakes in Conductive Education. He has been part of this wonderful program since the age of 14 months.

Jaden loves to be home and can find it hard to be in hospital and other places for long periods. He has a few words in his vocabulary and among the clearest is "home".

Jaden's photo has been added to Rick Guidotti's photographic exhibition Positive Exposure: The Spirit of Difference and the Society of Behavioural Phenotypes which was on display at Brisbane's Powerhouse Arts centre between 14 September - 17 October 2011.  From there the collection travels the world with the United States of America next stop.  The portrait in the exhibition was taken by photographer, Michelle Edwards.

Despite the many issues he has, he is a very happy little boy. He can be very determined in getting his own way. He loves affection but he can also be very cheeky at luring a person in to grasp their hair. Music soothes him, he is a bit of a musician, he plays drums, guitar and piano all to his own rhythm. He loves to dance in his wheelchair and sometimes he goes wild dancing to music in the car. So much excitement can sometimes tire him out very quickly, but he loves being a busy little boy.

These pictures of Jaden depict a little boy who faces many obstacles, yet despite the many health issues he remains joyous. He does not understand hatred or conflict. He only understands love. In this, he remains wiser than most of us.

Jaden with his portrait at Brisbane Powerhouse

Jaden

Jaden and Toughie at Sea World

Jaden's portrait at Brisbane Powerhouse



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