Legislative Council - Fifty-Third Parliament, First Session (53-1)
2014-06-04 Daily Xml

Contents

Wishbone Day

The Hon. J.A. DARLEY (15:52): I rise today to speak about Wishbone Day. Each year, 6 May is Wishbone Day and is held to raise awareness of osteogenesis imperfecta (OI), also known as brittle bone disease. Osteogenesis imperfecta is a genetic condition which is characterised by brittle bones which break or fracture easily. It is caused by the mutation of one or two genes that are responsible for making type I collagen. Collagen is the major connective tissue of our bodies, and those with OI have brittle bones as they have less or poor quality collagen.

OI can be caused by a genetic defect inherited from a parent or by a genetic mutation. There are different types of OI, ranging from those experiencing mild symptoms who may go undiagnosed, to those who experience severe symptoms and who are unable to participate in contact sports or may experience a fracture from just standing up. OI is a condition that stays with a person for life, and those with severe OI may have a shortened life expectancy due to the condition. In addition to fractured bones, OI sufferers may experience muscle weakness, hearing loss, curved bones, scoliosis, restrictive pulmonary disease and cardiac problems.

Having a child with OI can be extremely difficult, as everyday actions can result in fractures. Some cases of OI can be detected in the womb, and there can be a risk of fracture to the baby during birth if care is not taken to handle and deliver them appropriately. Incidences of fractures peak from the age of two, when children become mobile and are still developing their motor skills. Once bones stop growing, the number of fractures generally decreases, with fewer incidences in adulthood. Women with OI usually experience an increase in fracture incidences through menopause due to the decrease in bone quality. Whilst there is no cure, medication which helps to strengthen bones and stimulates cell growth can be used to manage OI for some.

In South Australia there are 10 parents who are full-time carers to their children with OI. One such child is 3½-year-old Maddison Lane. When Maddison was two, she broke her leg in two places after little activity. Once recovered from this break, she broke her ankle four times back to back. After blood samples had been sent to America, Maddison was diagnosed with OI. Over the last year and a half, Maddison has experienced 14 more bone fractures of her leg, arms and spine. She spends many weeks in a wheelchair and must try to understand the limitations she has with standard play compared to other 3½-year-old children.

Maddison is currently receiving monthly treatment at the Women's and Children's Hospital. Unfortunately, Maddison's mother, who is her full-time carer, does not receive a carer's payment and she is currently advocating for a change in this area. Wishbone Day originated from the Australian OI conference in 2008 and has been embraced internationally, with Wishbone Day events being held in North America, South America, Europe and Asia.

The day is not about fundraising; it is about raising awareness, with their motto being 'Because awareness makes a difference'. Participants are encouraged to wear yellow, as yellow shines with optimism and carries the promise of a positive future. I hope that people will now remember 6 May each year as Wishbone Day and wear yellow to increase awareness of osteogenesis imperfecta.