Friday, May 23, 2014

JA Spotlight–Rylee

Last year at our local Arthritis Foundation’s Spring Walk I met the sweetest, most inspirational young woman named Rylee. I remember standing there with my Monkey when a woman approached me, a woman I’d never met. She started talking to me and telling me about her daughter (Rylee) and how our kiddos see the same rheumatologist (Dr. Kietz). She started to share their story with me. How Rylee went through months of pain and frustration before getting her diagnosis because they live in West Virginia (one of the 11 states who still does not have a pediatric rheumatologist). She told me how once they heard about the walk Rylee was determined to meet a fundraising goal and guess what, she not only met her goal but she exceeded it. What she told me next brought me to tears. You see, I had set a lofty goal last year since Monkey was an honoree and while I had come close to our goal I hadn’t quite reached it. I was ok with that though…I mean, I did the best I could for our first walk. But guess what. Rylee didn’t want to see us not reach our goal…since she had already met hers she wanted to make sure Monkey reached his his as well. She donated the exact amount we needed to reach our goal! It truly blew me away that at only 13 years old Rylee was so selfless and kind. (I mean, let’s be honest, most normal 13 year olds don’t think about much besides themselves.) I immediately sought Rylee out and gave her the biggest hug with tears in my eyes.

(Here are pictures of us meeting Rylee and her mom, Jen, at the Walk last year.)

Today I’m sharing Rylee as JA Spotlight because this girl continues to amaze me. I see in her what I hope that Monkey will grow to have. This girl won’t let JA slow her down and she’s got her mind set to make sure everyone knows about JA and what kids like her and Monkey go through. Rylee was chosen as one of this year’s walk honorees and boy does she ever deserve that honor! This year she set her fundraising goal even higher and guess what…she has raised over $8,000! She’s also done so much advocating that she was invited to be part of the Arthritis Summit in DC in March and recently was honored by Pittsburgh Mayor Peduto. She even got the attention of the local new station! (You can watch that feature here:

I recently wrote to Jen, Rylee’s mom, congratulating them on all they’ve done and asking to feature Rylee on the blog. When I asked her to share her thoughts here is what she had to say:
I am glad that she has decided to hit this disease straight on.  Her strength is an inspiration to me as well.  Just a short time ago, she was afraid to tell anyone for fear that she would be treated differently.  We have had many discussions and tears in this house about this disease and why her.  She has now accepted this and wants to become the voice for everyone that is either scared or embarrassed about having this.  Our goal is to make everyone more aware of juvenile arthritis and what these kids go through.  If we don't speak openly about this, things will never change.  She is all about changing the way we view this disease and educating people about its existence.  With her standing up to it, she has had more people come out and say, "that's what I have".  She doesn't want anyone to feel sorry for her but to join her on her journey of reaching for a cure. 
As a mom of a JA kiddo I am so incredibly proud of Rylee. She has shown show much poise and strength and she is truly such a wonderful role model for other JA kiddos. I pray that I can remain in contact with Rylee and Jen and that someday when Monkey is older he can lean on her for support…the kind of support only some one who’s experienced the same things can offer.