Friday, May 5, 2017

Juvenile Arthritis Event for Ava Jones

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Ava smiling through this interview.



I had the best interview of my life and I think I met my new best friends[Ava and Noelle]. Ava Jones is an eight-year-old girl that lives here in Metamora who is funny, smart, and beautiful. She wants to be an actuary when she grows up. Her favorite things are horses, puzzles, the color purple, singing Taylor Swift and tacos. She is so vibrant and full of life even though she has Juvenile Arthritis. Ava has been dealing with this disease and its terrible side effects since the age of two. One day, Ava woke up and her eye looked different. Her mom Stephanie rushed her to the doctor, where she was told that Ava had lost sight in her right eye. Just like that, overnight blind in one eye. That is how horrible this disease is. Ava has an "extra special" form of JA, it is known as JIA.

Juvenile Arthritis [JA] is a horrible disease that effects 300,000 children just in the USA. There are several different types of arthritis that they suffer from and this disease is usually partnered with other diseases. Meaning, they have an underlying cause that hypes up arthritis. The saddest part of all of this is that there is not enough research or time put toward a cure for this disease. A lot of people do not know that a child can get arthritis. This is far from true, and the children with this debilitating disease will deal with this their entire lives.


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JIA is an autoinflammatory disease and only 10% of children have this type of arthritis. What makes this so awful is the risks involved with the inflammation of the heart, lungs, lymph nodes, liver, and spleen that can be accompanied by high fevers and a skin rash. It is recommended that the child has an ophthalmologist and have regular eye exams done frequently, as this disease moves quickly. Most of the other types of JA are autoimmune. In this case, the immune system works backward, where the white blood cells attack healthy cells and tissues.The cells are overactive and have no infection to attack leaving them to attack healthy cells. There is no specific testing that can be done to determine whether one has arthritis. They must go through a series of tests that are basically an elimination process.There are not very many Pediatric Arthritic doctors. Therefore, Ava and her family have to travel to Chicago just to see her doctor. Sometimes they have to stay overnight and the cost of gas and road tolls and lodging can get expensive. Even though Ava has to take a weekly dose of chemotherapy, she is not qualified to get help from St. Jude. The arthritis foundation does not have the same amenities as St. Jude. The Jones family, like many others, have had struggles with money and medical bills. Last year at one of the only two JA events, Stephanie was in a support group of parents. Some of the parents had to decide to pay bills or buy their kids medicine.This is when she decided to take action. People should not have to make choices like these. There needs to be a funding program in place like St. Jude, but for JA. Stephanie began Ava's Army of Angels and they will be having an event at Didley's Place located at 920 N Niles St, Saturday, June 10th, at 2:00 pm.


This will be a fun-filled family day! Competitive bags tournament, inflatables for the kids, games for the kids, food and to top it off a SILENT AUCTION filled with awesome baskets!!!! Oh, and there will be a dunk tank...who will be getting in the dunk tank will be announced closer to the event!!!The event will benefit both Ava who suffers from Systemic Juvenile Idiopathic Arthritis as well as  Ava's Army of Angels.

Feel free to visit the page www.facebook.com/Avasarmyofangels for more information on Ava's battle with JA!! Let's all show Ava and the other 299,999 children suffering from Arthritis that we are in their corner and they do not fight this battle alone!!! 

 Ava says "I have arthritis but I am not old" and she also claims "I have JA but it doesn't have me." She is so cool and brave. She has to endure multiple procedures throughout the year. One example, Ava's eye has to get a shot in it from time to time, she assures me that it doesn't hurt but I am squeamish. "I am stronger than JA," Ava told me. Ava, you are an amazing inspiration to us all!

Please come out and join this little girl on her tough journey. Contact [email protected] to find out more info or if you are interested in donating for the event.  


Source: National Institutes of Health

For More Information About Juvenile Arthritis and Other Related Conditions:

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health

1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll-free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: [email protected]
Website: https://www.niams.nih.gov


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