![\"\"](\"https:\/\/static.timesnewsgroup.com.au\/prod\/uploads\/sites\/2\/2023\/04\/image_67232513_16132.jpg\")
“It’s an incredible achievement by so many to get the register to finally launch. You can check this all out on Facebook page ‘Jump in and swim for Bondi’.<\/p>\n
Bondi’s mother Leslie was extremely proud to see her daughter deliver her speech at Parliament House.<\/p>\n
“She has really taken this challenge on.<\/p>\n
“She is in pain on a daily basis, so to swim the distance she swam and to continue raising and maintaining awareness for a disease that had no solutions for its patients, was a really proud moment for us as a family.”<\/p>\n
Bondi lives with JA in one of her knees and has experienced pain flairs on a regular basis in her ankles, jaw, and eyes in the 10 years since she first developed the condition.<\/p>\n To cope with the pain, Bondi receives steroid injections as a young child, but has recently stopped taking medications, using an osteopath as an alternative remedy method and maintaining a healthy diet.<\/p>\n “The trip also provided a chance for Bondi to meet other children that suffer from juvenile arthritis and connect with them. For her to become a support resource for some of the younger kids was super special,” Leslie added.<\/p>\n JAFA founder Ruth Colagiuri said the disease is one of the most common chronic childhood diseases and affects up to 10,000 children in Australia.<\/p>\n “Despite this, and the fact that these children have debilitating and painful symptoms, there is very low recognition and understanding of their situation,” Ms Colagiuri said.<\/p>\n “Most of us know an adult living with arthritis, but not many people appreciate the fact that the disease can hit children and cause heartbreaking symptoms.<\/p>\n “Inflamed joints can mean children are unable to walk, play sport or even hold a pen.”<\/p>\n For more on juvenile arthritis and the newly opened register, head to www.jafa.org.au<\/p>\n","protected":false},"excerpt":{"rendered":" A SURF Coast resident is reflecting on her advocacy with pride after playing a key role in a newly opened national register for a rare and painful disease. Thirteen-year-old Torquay resident Bondi Condon made a trip to Parliament House in Canberra last month to attend the official launch of the Juvenile Arthritis Registry. The registry […]<\/p>\n![\"\"](\"https:\/\/static.timesnewsgroup.com.au\/prod\/uploads\/sites\/2\/2023\/04\/image_67527425_37602.jpg\")