Tony Pasin (Barker, Liberal Party) Share this | Link to this | Hansard source

On 7 May I had the privilege of attending the launch of Kaitie the Courageous, a book that tells the story of a brave nine-year-old girl, who was born with the incurable mucopolysaccharidosis type I, commonly referred to as Hurler's syndrome.

The mucopolysaccharidoses, MPSs, are a group of rare genetic disorders affecting both children and adults. These diseases involve an abnormal cellular storage of sugars called mucopolysaccharides, caused by the absence of a specific enzyme.

There are currently 11 recognised MPS disorders affecting 25,000 Australians. MPS is a potentially fatal condition that causes intellectual impairment, eye and hearing problems, bone and joint malformation and heart and breathing difficulties. There is unfortunately no cure for MPS, which is a progressive and life-limiting disease.

Kaitie is a remarkable nine year old, and although Kaitie the Courageous unveils the challenges those with rare diseases are confronted with it also showcases the inspirational way in which brave Australians such as Kaitie live life to the full, notwithstanding that in Kaitie's case she was diagnosed at the age of two, is currently cared for by 17 specialist medical teams and has endured close to 40 operations.

The launch of Kaitie the Courageous came ahead of MPS Awareness Day on 15 May. For MPS Awareness Day Australians will be asked to showcase their support for MPS by doing something brave, so I will end with an offer to colleagues: if you have a suggestion for how I can courageously show my support for MPS, please contact my office.