Melissa Parke (Fremantle, Australian Labor Party) Share this | Link to this | Hansard source

I want to talk today about two girls in my electorate who I find inspiring as I reflect on the different lives that are given to us, some harder and some easier, and on the important role that government has in assisting those kids and their families who are affected by chronic health conditions and disability.

In March earlier this year, many members and senators would have taken the opportunity to meet with a youth ambassador representing the Juvenile Diabetes Research Foundation as part of the annual Kids in the House event. Amy Fitzgerald was the youth ambassador that I met, and she lives in my electorate of Fremantle. Amy was four years old when she was diagnosed with type 1 diabetes. She is now an active 12-year-old who participates in national surf-lifesaving and swimming competitions. When we met, she told me about the ways she has learned to manage diabetes in order to lead an active normal life. She said, ‘I control diabetes; diabetes doesn’t control me.’ Amy’s mother, Melissa, also lives with type 1 diabetes.

Many people would be aware that living with diabetes involves multiple blood tests each day to monitor and manage insulin levels. However, it is perhaps not commonly recognised that living with diabetes carries a serious risk of early-onset blindness, kidney disease and heart disease. Young people with type 1 diabetes are some of our most influential advocates. They are outstanding at raising awareness of the urgent need for investment in Australia’s best and most promising diabetes research in pursuit of a cure for this disease.

An equally worthy effort is made by those involved in the Politician Adoption Scheme, run by Jan Hansen, from the Developmental Disability Council of Western Australia, to ensure that political representatives understand the challenges that children with a serious disability or medical condition face on a daily basis. It was my privilege to be adopted by Chloe Corfield, who has atypical Rett syndrome and epilepsy. I am grateful to Chloe and her family for letting me into their lives and for showing me what it requires to live with a disability in a direct and practical way. Rett syndrome is a rare and acute neurodevelopmental disorder with severe physical and gastrointestinal consequences which develops when a child is around 18 months old.

Chloe’s atypical version of this disorder is less severe than typical forms, but she also suffers epilepsy and requires round-the-clock attention. She attends Castlereagh School in Willetton four days a week and also enjoys horse riding, riding on a specially designed trike, swimming, listening to music—ABBA was her favourite when last we met—going for rides in the pram, playing with her siblings and having spas at her grandparents’ house. Chloe’s parents, Tracy and Byron, do a fantastic job in providing a loving and vibrant family life for all their kids, and they run a business from home to better allow them to provide for Chloe’s needs. I know the joy they experience with their kids, but I also know they worry about the future, particularly in terms of the financial and other support that Chloe will need.

I take great heart from Chloe, Amy and their families and I applaud their fortitude and spirit. I am resolved to keep their example in my mind, especially when it comes to necessary reforms in the area of disability policy.