Saturday, September 8, 2012

JAFN & Meeting Mia

Today I had the wonderful ability to meet up with two other families and another young adult affected by juvenile arthritis. I met Nathan, a 10-year-old with uveitis, as well as Stephanie, a young woman about my age who was lucky enough to be working the JA Conference in St Louis this year.

We all shared stories about our experiences with JA and offered each other advice. It was a small group, but I think that helped for us to really spend time together. It was one of the most wonderful experiences I've ever had. When I was diagnosed, the internet was pretty new and to be able to connect with kids who I can identify with was really cool.

The other family I was lucky to meet was one that I've gotten to know better over the summer. Mia is a sweet little girl, a toddler, who has been dealing with Still's for so much of her life. She is so cute, holy cow. Mia brought her mommy Megan and her auntie - who has AS - along for the ride too.

I have met a few other people from my blog in person, but not many. And no one that I have met has systemic/Still's - or has been this young.

She is so cute, ohmigosh
The five of us (I brought the boyfriend along too) went out to lunch and had a really nice time. I think it was great for all of us. Megan's sister and I were able to talk about dealing with changes as adults and the difficulties there, while Megan and I were able to talk about Mia's rashes and fevers. And I think Mia just loved making faces at me :)

I cannot wait to be even more of a part in the lives of Megan, Mia, and their family. I think it will be a good thing Mia and myself. I will be able to watch the disease from a more outside perspective, which will be interesting. And maybe I can be kind of a mentor and help her through the tougher times (that I just really hope she doesn't even get to face and I can be just a fun friend).

This all just helps to hammer home for me the importance of the raising awareness and keeping up the search for a cure. She is so young and full of life. I want her to be able to accomplish all of her dreams and not feel held back by her illness. On a related note, I'm applying for a job with the Arthritis Foundation that I found out about this morning. Ohh yeah!

Thank you Megan and Mia for coming down and visiting with us! If you want to learn more about their story, please check out their blog here.

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