The Voice and Face of JIA

The Voice and Face of JIA

Several weeks ago an order was placed for a large number of blue CureArthritis silicone bracelets (available here https://curearthritis.org/shop/). Shortly thereafter we received a corresponding email giving us insight into the story behind the order. We were deeply moved by the email and thought by sharing their journey it would help to give a voice, and a face, to this “invisible disease” known as Juvenile Arthritis from a mother’s perspective.

This is Breeley, a sweet, outgoing seven-year-old who is full of life & smiles!  She loves to color and paint with her sister Bentley, play soccer, sing, and dance. One of her dreams is to be a cheerleader like her oldest sister, Birkley.

This is also Breeley- weekly and bi-weekly injections, daily medication, stiffness, aching joints, a suppressed immune system from the medication, feeling tired, blood draws every eight to twelve weeks, an upset stomach from the shots and the anxiety of having to have them. A doctor’s appointment every three months to see her rheumatologist…that’s a six-hour drive roundtrip! This is arthritis and yes it does happen to children.

Breeley was diagnosed with Juvenile Arthritis two and a half years ago. “We had no idea at all. Honestly, at first I didn’t believe the doctor when he told us she may have Juvenile Arthritis and that he had to refer us to a Rheumatologist. I was in shock. Kids don’t get arthritis!  Breeley is only five years old – arthritis is something that happens when you get older!”

Breeley’s mom thought that there had been a mistake made. That the rheumatologist would assure her that Breeley was a fit and healthy little girl. Devastatingly this wasn’t the case, after blood tests and numerous x-rays their worst fears proved to be true. “My beautiful, five-year-old daughter had arthritis, Juvenile Idiopathic Arthritis.”

A million questions flood your brain all at once. How did she get it? What happened? Was it something I gave her? Her dad? How bad is it? How bad will it get? Will she always have it? After a lot of thinking, letting everything sink in, we made the choice to contact the rheumatology clinic at Children’s Mercy Hospital in Kansas City, MO.  We wanted Breeley to be completely comfortable with her doctor, and frankly, we wanted the best doctors involved in her care. We met with Dr. Harris who is nothing short of amazing. We talked, she ran some additional tests, made a plan, and then Breeley started treatments. Two and a half years later we are still battling JIA, only now we are not alone.

I co-own a boutique and screen-printing business called “The Loft” with Christina Murphy.  Christina also has arthritis. This invisible disease is all around us; it affects us all in one-way or another on a daily basis. Breeley, just like Christina, has good days and bad days, sometimes all in one day. We placed an order for the CureArthritis.org Bracelets in an effort to raise awareness of this invisible disease known as Juvenile Arthritis.  We are donating 100% of profits back to the Arthritis National Research Foundation.   These bracelets have been amazing for my daughter; she really thinks it’s neat that they have “exactly what she has” on them. She has given them to everyone (teachers, family/friends), it’s made some sunshine for her when it’s been pretty gray. Thank you ANRF for everything you are doing, and have done, to help cure arthritis!

The ANRF would like to thank Breeley and her mom for sharing their story and for being brave JIA warriors. We are sure we can expect great things from Breeley in the future and look forward to seeing all her successes.

 


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ANRF
Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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