Scott Morrison (Cook, Liberal Party, Shadow Minister for Immigration and Citizenship) Share this | Hansard source

I rise today to pay tribute to a delightful and special young boy from the Sutherland Shire, Joshua Gibson, who died on Tuesday, 2 November, at just eight years of age. Joshua was born with epidermolysis bullosa, a rare genetic disorder which caused his skin to blister from even the slightest contact. This is why children with EB are known as ‘Butterfly children’. Joshua’s courage and the dedication of his loving family, mum Kylie, dad Todd and brother Sam, came to my attention in 2008. I was deeply moved by this situation and, together with the association of EB sufferers led by Michael Fitzpatrick, we secured the support of the government to provide funding for a national free medical dressing scheme, which now helps with dressings for the 50 people around Australia like Joshua who suffer the most severe form of EB.

I thank the Minister for Health and Ageing once again for her support in making this scheme a reality. Joshua was a brave and dear little boy who had to endure more than any other child ever should. His courage and his parents’ selfless devotion have been an inspiration to thousands. Together they are the reason families across Australia are now receiving increased support to make what is an unimaginably difficult road just a little bit easier. I hope we can do more for the 229 others formally diagnosed and registered on the Australasian EB registry. Kylie, Todd and Sam’s gift was to provide Joshua with the best life he could have hoped to have in his condition. Their gift is a testimony to their love and dedication as parents and as a brother. My family and I join in grieving for your loss and in giving thanks for the precious life of a very dear little boy.

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