Welcome! Let me tell you about Mary.

Marian is my daughter. She is 10 years old and she has been diagnosed with JRA or Juvenile Rheumatoid Arthritis by her Pediatrician. **(Update, on 04-05-2016, she was diagnosed by her Rheumatologist with JIA, possibly systemic)**

We believe that she has had it for at least 2 years that we know of. Her doctor before this one wouldn't listen to our concerns and shrugged it off as normal growing pains in an adolescent. Marian was left to deal with the constant, horrible pain on her own. We even often thought she was faking to get out of doing her chores or going to school, which was odd, because she loves school. But, we did. We didn't know any better, we were new to this and didn't even know about JA (Juvenile Arthritis).

But when she started getting rashes, swelling, spending insane amounts of time sleeping, and never stopped complaining of the pain, even when there was something she wanted to do so badly, but just couldn't bring herself to get up to do it, we knew there was a real problem. I finally got her Pediatrician that she has now to hear me and she instantly referred us to a Rheumatologist. Unfortunately, the Rheumatologist is very busy as they are the only Pediatric Rheumatologist for hundreds of miles. So her appointment was set for April 5, 2016, in late October or early November of 2015. Yeah...long time to wait for something like this.

Marian is now in a wheelchair for school and any other outings away from home. She is usually in the chair for about 2 weeks out of the month for school. Sometimes more, sometimes less, it just depends on how she is doing. Here lately, it's been a bit more. She's been in a lot of pain. Her hip and ankle are giving out more frequently too. So she is unable to hold her little body on her leg, it just drops her to the floor.

She is using a laptop at school. Her right wrist is malformed. It stays swollen and in severe pain all the time. She can only write or do any motion for a few minutes and then she has to stop.

She started getting worse over this past summer. She would go outside to play, but only for a few minutes, then she'd have to come inside for the rest of the day, lay on the couch and watch tv or sleep for anywhere from 8-12 hours. She wasn't the spunky, happy, outgoing little girl she used to be anymore. She wanted to stay right with me, not really wanting to do much but play with her dolls on the floor or draw, which she could only do in little spurts or she'd be in pain, she would listen to music and sing, or watch YouTube videos. As where she used to go outside in the mornings and only come in for lunch and then off again until the lights came on outside. She loves to run, ride bikes, play with her friends, play on her swing set or on the tire swing in the front yard. JRA has taken all of that from her. At school, she has to sit out during recess and read a book while her friends play. She can not participate in P.E. and she loved P.E., they all love Coach, he's a lot of fun.

Marian has become the little girl who comes home, does her work (if she can), and watches tv or plays quietly with her dolls on the floor. A BIG change from who she once was.

We just found out about a Summer Camp for kids with JA. She is so excited at the idea of a week at camp with kids who are just like her and know what she is experiencing firsthand. They will even have their wheelchairs with them too. :)

We have also joined up with the Arthritis Organization to do Walk For A Cure 2016 in Atlanta, Ga.

We would love for you to join our team and come out to walk for Mary and all of the others who so desperately need a cure. #TeamMarian!

Walk For A Cure Atlanta 2016

Thanks for reading. I will continue to keep this blog up to date as often as possible. Marian's struggles are daily. And I have 3 other rambunctious children, so I will up date as often as possible. If you have any questions, advice or comments, please leave them here or e-mail me at Michelleazalea@hotmail.com