RAISE TO RISE
An initiative to spread awareness on Juvenile Idiopathic Arthritis
When Aanya Raux was diagnosed with Juvenile Idiopathic Arthritis (JIA) at the age of 11, she realised 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, Aanya is determined to spread word about this condition among children and youth.
“It took three months to get a proper diagnosis,” recalled Aanya in an interview with Daily Mirror Life. “I couldn’t walk, go to school and lead 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, Aanya 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 organising the fundraiser in January and it is scheduled for 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, Aanya 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 realised 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, Aanya 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.
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
I couldn’t walk, go to school and lead 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 realised 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”
Aanya also recalled how a lot of people didn’t really believe that she had arthritis