{Part Five} Lily’s Journey with Juvenile Arthritis


Jingle Bell RunLily was diagnosed at age 4. You’ve read our story through diagnosis. Fast forward over the next few years, and we find Lily in 3rd grade.

She has now dealt with having JIA for 4 years. While you’d think that would be enough time to get with the swing of things, every weekend shot is still a struggle. Anxiety, tears, bitterness. She goes through every gamut of emotions each time, like clockwork. It takes us 20+ minutes to give her a 10 second shot. By the time we are done, my husband, Lily and I are all mentally exhausted. We try to curb our frustration with her, because we “know” it is only 10 bad seconds for a week of freedom from pain. She just doesn’t understand that—and I was beginning to think she never would.

Enter the Arthritis Foundation. The year before this point in our story we had signed up for the Jingle Bell Run for Arthritis. I had heard of it before, but we had never been a part of it. So, we went. It was AMAZING. We met so many wonderful families, as well as Phil Melnarik, who is our local Development Director. He has helped us connect with other families for support, which has proven invaluable.

At this event, he also asked Lily if she would be the Honoree of the Jingle Bell Run the next year. She was slightly terrified (learning she’d have to give a speech at the beginning of the race), but politely agreed. Little did we know how much impact that single event would have on her.

By being the honoree, she learned to embrace her arthritis. Before this, she really didn’t tell her friends about it. No one outside our family and close friends knew that she had to take a shot each week, or what she went through. Her 3rd grade teacher invited her to present to her class what JIA was, what her life was like, and what the Jingle Bell Run was all about.

Together, we made her a power point. After some coaxing and pep talks, she stood in front of her class with me, and we talked about what she had been through, what she currently goes through, and how joining her team [The Fruitcakes] helps fund research for the 300,000 kids in the US dealing with this disease every day.

Phil (Arthritis Foundation) showed up at the school for our talk, and brought Arthritis Foundation gifts for all the kids in her class. Kids asked questions. My favorites included “Is it contagious?” and “If I crack my knuckles, will I get arthritis, too?” We had kids tell us their grandparents had it, and that it looked like it hurt. There was understanding, support, and love from kids her own age. It was heartwarming. That 1 hour in her life was such a huge leap for Lily, and the first step in owning her disease and becoming an advocate for herself.

On December 5, 2015, our little Lily, at age 8, took the stage to give a great speech in front of hundreds of people at the beginning of the race (for those of you with anxiety, you know what a HUGE step this is). She talked, I cried. I talked, I cried. Steve comforted us both. Her rheumatologist was there, along with many of the nurses in the office. Friends, new and old, family members and even acquaintances. It was awesome. I was a royal mess of tears, laughter and had overwhelming feelings of love and respect for all those who came out to support us. When we were done talking, we strapped on our tutus and did the walk. Literally!

It was an amazing experience. That year was a definite turning point in her life with this disease. She openly talks about it now, attends a camp for kids with arthritis each summer in Wisconsin Dells, and has friends all over the state who share her struggles, as well as right here in our community.

We have met amazing Arthritis Foundation members, such as Jessica Graser, the Community Engagement Director, who was the one who coaxed us to have Lily try Camp MASH (Make Arthritis Stop Hurting). She said it would be Lily’s favorite week all summer—and BOY WAS SHE RIGHT. Each year we are also fortunate enough to attend a JA Family day, where families from all over Wisconsin get together. Parents do mini-seminars and the kids are entertained for the morning. After lunch, we all get to relax and have fun—and the kids get to be just that—kids. Normal, having fun, laughing, bonding and playing together. It’s amazing. They even go so far as to involve siblings. Aubrey (Lily’s twin) was asked to be on a “sibling panel” two years ago. This was giving parents perspective from the siblings’ point of view. And—kids are honest. They didn’t hold back. It was eye opening. Arthritis Walk

Last year I was asked to help lead the Juvenile Arthritis Family Network in NE Wisconsin—a group that gets families together purely to have fun and offer support. We are supported and funded by grants through the Arthritis Foundation and have grown the group to about 11 local families who provide support to one another, as well as invaluable insight. I couldn’t imagine not being involved with the Arthritis Foundation. They have given so much to our family over the last 4 years—the biggest being confidence for Lily.

On a personal level, over the course of that year, it is hard to put into words how wonderful it was to see our little girl growing into a more confident young lady. Blood draws were slowly getting easier to get through, and she was participating more in the conversations at her rheumatologist appointments. I felt like we finally had things under control. Our rheumatologist was even talking about trying to ween off of the drugs! What!! I never thought that would happen. Pure joy. Elation. Excitement. Were we finally turning a corner? My excitement cannot even be translated into text. In Spring 2016, we started
going every other week with shots—then stopped. STOPPED! For the first time in 5 years we were DRUG FREE—and she was feeling good! As a mother, you really can’t ask for anything better than that. Too bad it didn’t last…Lily and Friend Arthritis Foundation Walk

Anne LaurentAnne is a mother of 3 girls—twin 10 year olds and a 5 year old. She lives in Ledgeview with her husband Steve, their three girls, and their dog Daisy. She attended UW-Milwaukee and received a degree in Clinical Laboratory Science with minors in Chemistry and Nutrition. After having twins and staying home for 3 years, she somewhat fell into a position as a Coordinator of a non-profit adult literacy group, and has been working part time from home for the past 7 years.  She enjoys chatting with friends, cake decorating, volunteering at school, helping coach softball and is continuously getting reigned into new projects within the groups she volunteers for. With one of her daughters being diagnosed with juvenile arthritis at age 4, the Arthritis Foundation has become a huge influence in the Laurent family’s household.