Jesse R


	Jesse R ~ ‘Wild / Jungle Animals’

DATE OF BIRTH: July 15th, 1991

ILLNESS: Juvenille Battens Disease.


	Jesse’s Quilt Stitchers: Australian Anne~Lismore, Elaine~Raby, Janet~Toowoomba, Karen~Canberra, Linde~Ambrose, Peg~Caloundra, Sarah~Victoria, Sharon~Casula, Stuart~Tasmania, Tamara~Canberra. International Cristina~Italy, Daniela~Italy, Debi~USA, Jillian~Norfolk Island, Julia~USA, Karen~Scotland, Lucia~Italy, Susan~USA.

		Jesse’s quilt top was assembled by Helen~Sydney.

BIOGRAPHY

Jesse was born in 1991 without any difficulties and no signs that he had a time bomb ticking. He met all his milestones and was a delight. Happy, placid and always willing to please. Jesse started to lose his eyesight when he was 6 years old. It was a long road from there until we got a definite diagnosis in approx 2003.

Between the ages of 6 and 11 we struggled to teach Jesse braille and other skills to survive with a visual impairment in a visual world. He had always done well and had a great memory so we couldn't understand why we were now struggling.

Over several years and after having several tests done Jesse developed epilepsy, his eyesight worsened and we finally got our diagnosis - Juvenille Battens Disease.

It is unfortunately a terminal condition.

Jesse at the age of 16 is now wheelchair bound, no longer able to communicate, is totally blind and is tube fed. He still smiles and has a great sense of humour and has never once complained although he definitely doesn't like naso - gastric tubes!!

He attends Red Hill Special School and has 2 younger brothers who thankfully don't have Battens. He likes nothing better than to be surrounded by his family in his room, snuggling up and watching movies or listening to Harry Potter stories. Jesse also loves all animals and was going to work as a vet or with animals eg Steve Irwin's zoo.