A SEVEN-year-old’s battle with a rare genetic disorder has seen Bathurst selected as the first country community authorised to raise funds for research for Westmead Hospital at its upcoming Radiothon.
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Christopher Clark suffers from the genetic disorder known as Tuberous Sclerosis Complex, and his life revolves around hospital, medicine changes and coping with their side effects.
His grandmother, Marian Clark, has always wanted to do something to help Westmead Children’s Hospital, which does so much not only for her grandson, but also thousands of other children from Bathurst, Orange Dubbo and the Central West.
At a visit to the hospital earlier this year, Mrs Clark was speaking with staff who suggested she get involved in the radiothon, because every dollar raised during the 24-hour period will be matched dollar for dollar.
So Mrs Clark got on board and Bathurst was authorised as the first country community to raise funds.
The community is being asked to donate, and can do so on line at radiothon.org.au or by calling 1800 770 122, between 6pm on Thursday, November 16 until 6pm on Friday, November 17.
Mrs Clark said it is only during the 24-hour period that people’s donations will be matched dollar for dollar by outside sponsors, and donors supporting the Bathurst Brain Research focus are asked to quote BR1000 when making their donation.
She said she was happy to part of a campaign raising awareness and money for the wonderful work the hospital does for children, especially kids in the Central West.
She said in 2017 alone, Westmead Children’s Hospital had 1200 children as out patients from Bathurst and 2500 from Orange, and even higher numbers from Dubbo.
“It’s important to me that as a community we try and do something to help,” she said.
Having a grandson with a rare condition, she said she knows what it’s like to live in hope that a cure may be just around the corner.
“I know the research has helped him, we’ve done trials with drugs which have helped him, but then his body becomes used to them and they stop working, so they have to start looking at something else.”
“But we always live in hope that something will come up, that’s why research is so important.”
“Like every other family with a child who has a rare medical condition we all hope, hope for the discovery of that miracle cure or life-changing treatment,” she said.
At the moment, Christopher’s life revolves around hospital visits, medicine changes and trying to master every day life skills, but Mrs Clark said that miracle cure could be literally right around the corner.
“That’s why it is so important to raise money for research, which could give kids an opportunity at a better life, I’m hoping people support this,” she said.