Steve Waugh Foundation lends support to rare disease sufferers

Thanks to Waugh, Renee Eliades, who is a 23-year-old in the body of a three-year-old, can now breathe easier. Eliades is suffering from geleophysic dysplasia, a form of dwarfism, and is dependent on bottled oxygen among other things.

Steve-Waugh
Steve-Waugh Steve Waugh (File photo)

Former Australian captain Steve Waugh is helping victims battle with rare diseases through his Steve Waugh Foundation in Sydney.

Thanks to Waugh, Renee Eliades, who is a 23-year-old in the body of a three-year-old, can now breathe easier. Eliades is suffering from geleophysic dysplasia, a form of dwarfism, and is dependent on bottled oxygen among other things.

Now, the Steve Waugh Foundation has provided Eliades with the resource she requires to stay alive. She said that she requires lots of equipment for her everyday life, which includes a wheelchair, oxygen, bipap machines, concentrators, medications and so on, which all aren’t so cheap, News.com.au reported.

Eliades claimed that Waugh has made their life ‘that little bit easier’ by providing them with portable oxygen cylinders, adding that these cost 12 dollars each and she needs one bottle for a whole day. The former skipper is marking Rare Disease Day on Saturday by taking dozens of people on an ‘outing’ to Sydney’s Taronga Zoo.

About two million Australians, a fifth of them children, suffer from a rare disease.

Waugh claims that they outnumber Australian diabetes sufferers, yet their parents consider them to be ‘orphans of the health system’. There are more than 6000 rare diseases, including certain cancers, cystic fibrosis, muscular dystrophies and Huntington’s disease, while it is difficult to put a name to many, which creates difficulties in itself.

He said that diagnosis is often delayed, adding that most often one doesn’t get a definitive diagnosis which leads to a myriad of problems. He said that often one can’t get funding because one doesn’t fit into any category for any organisation.

Waugh added that medicines are often ‘very expensive’, adding that there is ‘very little respite care’ for parents, and siblings in a lot of ways ‘get left behind a bit’ because when one has a child with a rare disease they are so focused on getting the right treatment that other things are sacrificed.

He signed off that the message of international Rare Disease Day is ‘day by day, hand in hand’.