De Pere teen shows strength in rare disease battle
By Heather Graves
DE PERE – For the past nine years, 13-year-old De Pere middle school student Lily Laurent has fought a battle within herself, one many know little about.
Laurent has juvenile idiopathic arthritis (JIA), an autoimmune inflammatory disease where her body’s immune system becomes confused and starts to attack the joints, causing swelling, stiffness and pain.
“You can think of this as friendly fire, where the immune system does not solely attack external threats, but confuses one’s own body as a threat,” said Dr. Paul Tuttle, Laurent’s rheumatologist at Orthopedic & Sports Medicine Specialists (OSMS). “This can make activities of daily living difficult to do.”
July is Juvenile Arthritis Awareness Month, which highlights the chronic disease Tuttle said affects 300,000 children in the United States.
“JIA is an invisible disease,” said Anne Laurent, Lily’s mom. “Most of the time you would never know that she has an autoimmune disease. She rarely complains. If there is one thing I’ve learned about JIA kids over the years, it is that they are tough and stubborn. It’s inspiring and heartbreaking. We should all have that much courage and stamina.”
Lily was diagnosed with JIA when she was 4 years old, after some swelling in her knee didn’t subside.
After many dead-end doctors appointments brought no answers, Lily was referred to a rheumatologist.
“Once at the rheumatologist, Lily had numerous vials of blood drawn and so many tests done, confirming that she had juvenile idiopathic arthritis,” Anne said.
It was an uphill battle for Lily over the next several years, as she went through joint injections of steroids, home injections and a variety of drugs to help get the disease under control.
“The biggest struggle Lily has had with JIA has been anxiety to needles and meds,” Anne said. “For some reason, when we started at home injections and blood draws every three to six months, I thought it would get easier as she got used to it. But, that was definitely not the case. Methotrexate, being a chemo drug, can make you feel nauseous and sick after you take it. Once she realized the pattern of feeling sick after taking the drug, she developed so much anxiety to taking the medication.”
Anne said Lily still struggles with her anxiety, but as treatments started to work the anxiety has subsided some.
“We have had some wonderful nurses at OSMS that have truly helped make the experience have the best outcome, and for that I am forever grateful,” Anne said. “We are incredibly lucky to live in Green Bay, where there are currently two pediatric rheumatologists. That is almost unheard of, not only in Wisconsin, but across the United States.”
Lily is now on a biologic, a medication that helps dampen the inflammation.
She also gets an infusion every eight weeks.
Anne said for a long time, she knows Lily felt hopeless.
“She has gone through periods of frustration,” she said. “Now, I think she has renewed hope. She doesn’t balk at taking the meds now because we finally found a combination that works. She had to see it work and feel better in order to accept that treatment really does help.”
Tuttle said Lily’s battle with the disease is encouraging.
“Treatment can allow children to do the things they want to do and prevent joint damage,” Tuttle said. “However, it took some time to find the right combination of medications to reach this goal.”
Lily said the hardest part of having JIA is feeling different.
“Sometimes I feel different at school when I can’t participate in gym class,” she said. “That, and the exhaustion that comes along with it. If I push myself too hard, I know my knees will likely hurt that night or the next day. Sometimes I do it anyways and sometimes I don’t go because I don’t want to deal with the pain.”
There is no cure for JIA, but after many trials and errors, Lilly is heading toward remission.
“For the most part, we don’t live life differently,” Anne said. “Yes, we let her rest more when she needs it, and we don’t push on days that she has an infusion. But, as with regular arthritis, the more you move, the better you feel. So, we encourage her to move whenever possible.”
Lily does her best not to let JIA stop her from doing the things she loves.
“I love to golf,” she said. “I have two great friends who I get to golf with a lot. We are too young to drive the carts, which means we have to walk all the time. Sometimes it’s hard for me to keep up.”
Lily also enjoys drawing, painting, riding bike, playing with her dogs and hanging out with her friends.
She lives in De Pere with her parents, Anne and Steve, along with her twin sister Aubrey, and younger sister, Zoey.