The Bloods culture encompasses many traits, one of which includes the feeling that you are part of much more than a footy club, you’re part of a family. It stretches far beyond the walls of the SCG, and in the case of Joshua Jones it takes us to the other side of the country in Western Australia.
Eleven-year-old Joshua suffers from Duchenne Muscular Dystrophy (DMD). DMD is a genetic disorder characterised by progressive muscle degeneration and weakness due to alterations of a protein called dystrophin. Children with DMD have difficulty running, jumping, walking and long term it affects the heart and respiratory system.
The Swans first learned of Joshua’s story in 2021, and since then have rallied behind him to help raise funds for his cause, but the fight for support doesn’t end here.... and we are calling on our club and our supporters for your help!
Joshua and his family now face the enormous task of raising $300,000 to get access to lifesaving medication, Viltepso. Despite this drug being approved for use in Japan and America, it is yet to be approved by the Therapeutic Goods Association in Australia, meaning it will cost the Jones family $12,000 per week for the life-saving infusions.
Although treatment with Viltepso will not cure DMD, it will slow the progression of the condition. As Joshua’s mother Michelle Jones explains, the drug could extend the lifetime of individuals by allowing them to eat, walk, and breath without assistance.
“The last few years we've been desperately trying to push the government, pharmaceutical companies, health department, ministers, and so many people to get the drug approved here,” says Michelle.
“Because he's got no dystrophin, his muscles break down and every muscle is affected. If we can get this drug into him, it'll slow that down in the hope that we can then get him onto a gene therapy trial in the future, which is meant to be on the road to a cure.
"His muscles are starting to really break down, he’s struggling now to get up steps and even to get off the floor, it's a real struggle. The sooner we can get this drug, the better.”
You can get behind Joshua’s cause by donating online HERE or by donating cans through your local return and earn scheme.
As long-time passionate Swans supporters, Joshua and his family were thrilled to catch up with the team at Captain's Run in Perth ahead of the game against Fremantle on Saturday night. Players were equally as excited to see the Jones family, signing their guernseys, boots and even Joshua’s custom Swans wheelchair.
For more information on Joshua’s cause, head to the ‘Join Joshua’ Facebook page.
