Feb 24 2020. view 2144
When Anya Raux was diagnosed with Juvenile Idiopathic Arthritis (JIA) at the age of 11, she realized that all the flares in her body were signals. Defined as the most common form of arthritis among children and adolescents under the age of 16, it is a condition with no defined cause. Having gone through a challenging period during her youth, Anya is determined to spread word about this condition among children and youth.
“It took three months to get a proper diagnosis,” recalled Anya in an interview with Daily Mirror Life. “I couldn’t walk, go to school and lead to a normal life. Thereafter I was given a biologic for one year and then last year I got flares up and down and I had to change my biologic again. Since then I have been leading a normal life. I realized there are thousands of children who go through the same condition I’m in and therefore thought of starting a junior initiative to spread more awareness on JIA.”
This is how the J.I.A Foundation commenced operations last November. Together with her friends, Anya had been able to make cards, bracelets, bookmarks and raise funds during the Christmas season. “Because it has been going so well I’ve always wanted to have a walk to raise funds,” she continued. “We started organizing the fundraiser in January and it is scheduled on February 29 especially to spread awareness on children and youth with arthritis. Once people got to know about this condition a lot of them wanted to send in their donations.”
Speaking about the stigma, Anya also recalled how a lot of people didn’t really believe that she had arthritis while some also went to the extent of judging it as a psychological condition. “That put me down a lot. I realized that there’s a dearth of pediatric rheumatologists in Sri Lanka and that children in rural areas are at a greater disadvantage. Now it’s more evident that there are children who have arthritis and you need to get an early diagnosis and clear it out. But in my case, I had a late diagnosis. It was quite challenging because I was bed resting all the time and couldn’t eat food I liked.”
After two months of hard work, Anya along with 19 of her friends, is getting ready to pull off ‘Raise to Rise’ on a grand note. The walk will commence in front of Taj Samudra Hotel and will finish at the Air Force Grounds followed by a concert and fun activities for participants. Many school-level performers and veterans in the field including BNS will perform to make the event a success while popular figures including Mahela Jayawardena, Roshan Mahanama and Otara Gunawardena have extended their support. “I want to extend my sincere thanks and gratitude to all my friends who were there for me. Since it’s the first event done to spread awareness on JIA, I like to invite more parents to bring their children to be a part of the event,” she said in her concluding remarks.
Funds raised from ‘Raise to Rise’ will be in aid of Ragama Rehabilitation Hospital and Lady Ridgeway Hospital.
Several packages are on offer for those interested to be a part of the event :
T-shirt, registration for the walk and event ticket : Rs. 1500 (the T-shirt is complementary. Till stocks last)
Entrance ticket for the concert : Rs. 1000
Tickets could be purchased at Raux Brothers Concept Store, No. 746, Galle Road, Col. 4
For more information about the event, you could reach out on the following social media handles :
Instagram - _juvenile_arthritis
Facebook – J.I.A Foundation Sri Lanka
Raise to Rise will be held on February 29, 2020 from 4.30pm onwards. Participants of the walk are expected to gather in front of Taj Samudra Hotel.
Pics by Waruna Wanniarachchi