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Saving Joshua
He’s only six years old, but he has a massive fight on his hands. Joshua’s parents say they will stop at nothing to fight his illness. Picture: MELISSA MEEHAN
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HE’S only six years old, but he has a massive fight on his hands. And Joshua Schwarz’s parents say they will stop at nothing to fight the “naughty little bug” in his head. Just meeting him, you wouldn’t guess that he has been given only months to live. Joshua is fighting an aggressive form of brain cancer, coupled with a rare genetic disorder, making it almost impossible for doctors to treat him. He was first diagnosed with a brain tumour in March, but two weeks ago his parents received the news no parent should hear. “When he was first diagnosed in March, we thought it was a lowgrade tumour that was treatable with radiation or chemotherapy,” mum Penne said. “But after a biopsy two weeks ago, we were called in and told it was an anaplastic astrocytoma grade three (AA3), which is an aggressive, fast-moving form of brain cancer.” After further tests, Penne and her husband Wolfgang, were told that Joshua also suffered from a rare genetic gene MSH6, which meant chemotherapy and radiation were not an option. “The MSH6 stops cells from regenerating, which means the usual forms of treatment won’t work for Joshy - it would just cause more damage,” Penne said. “And where the tumour sits, they can’t get to it - it’s in the area where language, understanding and movement are affected. “So doctors won’t do it because there is a high risk of stroke, an inability to communicate, paralysis - it could basically turn him into a vegetative state.”
Faced with so many roadblocks, Penne, Wolfgang and their daughter Jade hit the books, reading everything they could about AA3 and MSH6, in an effort to save Joshua. “Because of his age it is hard to treat him,” Wolfgang said. “But we’ve been in contact with hospitals in Germany and the United States. “There are different things being done to treat cancer in Europe and the US - like stem cells, gene therapy and immunotherapy.” The family plans to take Josh to Germany in an attempt to save him, or at the very least extend his life. But they need the support of others to raise money for the trip and pay for his treatment. The have set up a fundraising site <http://www.gofundme. com/5k4jbo> where people can donate. Penne said the family had already witnessed so many acts of kindness from those in the community. “His kinder has been amazing,” she said. “And so many other people want to support us in our journey. “Two weeks ago we had never heard of this type of cancer or the genetic disorder and with so much sadness, we’ve really seen the good in people.” A fund-raiser will be held this Thursday 19 December at Sooki Lounge in Belgrave, where local bands will perform in exchange for a donation. Friends have also organised a fund-raising day at the Upwey Anglican Church on Saturday 18 January from 12 noon to 4pm. Auctions, raffles, kid stall activities, jumping castles and face painting will all be there on the day to celebrate Joshua’s life.
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By MELISSA MEEHAN