28 February 2020

Anya Raux educated me about Juvenile Idiopathic Arthritis (JIA)



JIA. I had never heard that acronym. Offhand, if someone asked, I might have thought it stood for some international airline. Not any longer. I know now. And that’s because of a young girl, still only in the 9th Grade and not yet 14 years of age.

Anya Raux. She was diagnosed with Juvenile Idiopathic Arthritis (yes, that’s ‘JIA’) when just 11. She found out soon enough that it is the most common form of arthritis among those under 16 years of age. 

Anya elaborates thus in an appeal to would-be sponsors:

‘JIA is an autoimmune disease, where a child's immune system attacks his or her joints, causing a great degree of pain and permanent damage to the joints, if left untreated. In children, this disease can affect a wide range of areas within their bodies, causing pain and debilitation, which also make diagnosis challenging. Due to my experience with juvenile arthritis, I wanted to raise awareness about the disease and its symptoms, in order to help children with JIA get diagnosed and treated as early as possible. With the funds raised, we are also hoping to start a fund to help children who cannot afford to access medication and treatments. Many children in Sri Lanka do not get diagnosed or treated properly. Some families cannot afford to buy medication or provide a holistic treatment approach, needed to combat and manage the disease. It is vital to diagnose and begin treatment as soon as possible, in order to prevent permanent, irreversible damage to their joints.’

I didn’t know. Now I do. 

More crucially (and this is what makes her so special) she decided that everyone, adults included, ought to know about JIA. That, naturally, is the first step towards proper treatment that would enable those afflicted to lead a normal life. She didn’t have to do it, but she did. She had good friends who quickly realized how important the idea was. They helped. All 18 of them. So in November 2019 they started making cards, bracelets and bookmarks to raise funds. 

Obviously such initiatives never reach ‘enough’. The girls were up to the challenge. And in January this year they decided to organize an awareness walk. They called it ‘Raise to Rise.’ Apt. 

On Saturday, February 29, 2020, hopefully hundreds of people will walk from Taj Samudra to the Air Force grounds where there will be a concert and lots of activities. Celebrities will be in attendance and by their very presence will endorse fully the efforts of these girls.  Hopefully, it will create awareness and generate funds for these incredible set of girls led by Anya to continue the amazing work they do. 

Awareness is key, Anya says. It helps alert those who have ‘flares’ as she did to seek treatment. It also helps generate empathy among others so they will begin to understand that children and youth can get arthritis and that complaints are not reflective of some imagined psychological problem. 

They’ve come far but they’ve got a long way to go, obviously. They are young teenagers who have essentially taken on a project that adults and those in relevant agencies ought to have done but haven’t for perhaps legitimate reasons. They haven’t however complained. They’ve done their bit and they are fighting way above their respective weights. 

Sometimes it takes a child to speak truths that adults are, well, too old to notice or comprehend. Sometimes it is the enthusiasm and will of a child that shows the world that certain things are possible. Often the first step is small and it’s usually a child who can take the small step. Naturally parents step up to the plate. They support. Their friends get involved. It’s all good. 

Raise to Rise. The meaning is pretty obvious given what JIA means. It’s not just money they are raising. They are raising the spirits of a lot of people, even those who have other ailments. They raise up individuals, families, collectives and indeed the nation. 

They will all be walking on Saturday. Not miles and miles and miles, of course. Then again, they’ve already walked all over the hearts of dozens if not hundreds of people. That’s something, isn’t it? Anya Raux probably will credit her friends, parents and others. She deserves a cheer though. And appreciation.  

Thank you, Anya. You’ve made me aware. And you will make many others aware too, by and by.

This article was first published in the DAILY NEWS [February 28, 2020]
malindasenevi@gmail.com. www.malindawords.blogspot.com.

Other articles in the series 'In Passing...':  [published in the 'Daily News' on Monday, Wednesday and Friday every week]






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