The Australian Parliament Sports Club took a table at the Hillier Family fundraiser last night in order to help a friend in need. John Hillier has been involved with the ASPC for a number of years. Organised by Steve Doszpot MLA ACT Government, the dinner aimed to raise funds to help pay for the care of John and Linda's two sons who have severe disabilities (Duchenne Muscular Dystrophy, Autism and Diabetes). The night was a huge success and lots of money was raised including $6000 dollars donated by the ASPC.
ABOUT THE HILLIERS: John and Linda have two delightful boys who, despite their disabilities, enrich the lives of their parents and all of us who know them.
Lee is now a student at the ANU studying Politics and Sociology. His grades are exceptional and he continues to amaze us all. Dean is at the Woden School and is progressing well though he is yet to talk about it. He is 13, does not talk, is not toilet trained, his diabetes is best described as usually unstable; his problems with depth of vision mean he has problems with stairs and his gluten intolerance also adds to the expense of caring for him.
Lee’s expenses, on top of the usual things that young people spend their money on – iTunes, music and clothes, include things like the tubes, masks and filters for his breathing assistance equipment, $90 per week for his transport to and from uni, as well as the cost of the carers who travel with him. What his small disability pension does not cover John and Linda need to.
Dean has medical expenses as well and, for example, his incontinence issues cost the family approx. $8,000 per annum on nappies, pads and pull up pants in an attempt to keep him dry and free from nappy rash. His diabetes management is also horrendously expensive as are the rest of his medical issues. The family has, as you can imagine, bills that most of us cannot contemplate let alone control.
John works two jobs and Linda is the full–time carer for both boys. Neither of them has had a break from the 24/7 care and, in fact, the last time they were able to go on holidays – it was to a purpose built, disabled friendly, facility at Narooma in 2008 – as it turned out both boys became sick during those holidays. Carers ACT assisted John and Linda for a week at the farm, as a small way of repaying John and Linda for always making themselves available to assist other parents who are just starting down the road of caring for children with disabilities.