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October Calendar Kid: Moving mountains

Published by , on Oct 29, 2018
Lily Jingle Bell Run Family Pic

Lily and her family at last year’s Jingle Bell Run

“You’ve been assigned this mountain to show others it can be moved” is the inspirational quote on a special web page detailing Lily Addair’s medical journey. Her website, Lily’s Elves, is inspired by this strong and spunky 8-year-old’s battle with juvenile arthritis. The site is named for Lily’s team in the Arthritis Foundation’s Jingle Bell Run, a special event that raises awareness about juvenile arthritis and funds for research.

The imagery of moving the mountain – not just climbing over it – clearly reflects how Lily and her family faced her diagnosis. Together, they’ve fundraised for research to find new ways to fight it, shared their personal story to promote awareness and passed along information to help other families facing similar issues. Along the way, parents Ryan and Tera watched their daughter fiercely push through pain and face many difficult moments just “to feel normal.”

“She’s our hero,” Tera says. “Lily is the strongest little girl we know. Not only is she strong, but she uses her disease to try to make a difference for others. She helps raise thousands of dollars for arthritis research every year and attends everything she can that helps advocate for herself and kids like her.”

Big words, big diagnosis

Lily was diagnosed with oligoarticular juvenile idiopathic arthritis just before her third birthday. Oligoarticular refers to arthritis occurring in four or less joints, typically larger ones like the knees, ankles or elbows.

Exactly what causes JIA is unknown, which is what the term “idiopathic” means, but researchers do know it relates to the body’s autoimmune system not working properly. With JIA, the immune system becomes overactive and mistakenly attacks healthy tissues and cells when there’s no infection to fight. Arthritis refers to inflammation in joints that results in joint pain, stiffness, swelling and loss of function.

Symptoms can last for months, even years, with pain and stiffness worsening, or flaring up, when the immune system’s issues become more active. Decreasing the inflammation is considered “achieving remission,” the main goal of treatment. Limiting permanent damage is also a focus.

Easing her daily pain

When she was two, Lily’s parents noticed her hesitating to put weight on one leg, especially in the mornings. She also wanted to be carried often. They visited several orthopaedic doctors to try and figure out what was going on and eventually were referred to a pediatric rheumatologist who confirmed Lily was experiencing JIA symptoms. A rheumatologist is a specialist in musculoskeletal disease and autoimmune conditions, commonly referred to as rheumatic diseases, that affect different parts of the body.

Lily was given steroid injections in her knees – by then she’d developed issues in both – to help reduce the inflammation. In the months that followed, her pain and stiffness seemed to lessen. “Because she was so young, it was hard for her to tell us what was wrong or that she was in pain,” Ryan says. “She didn’t have the words to express what she was feeling. We always lived in fear she was hurting and wasn’t telling us.”

About a year later, Lily’s parents noticed she was again avoiding putting weight on one leg and her ankle was swelling. A second set of steroid injections had little effect this time and they moved to an oral disease-modifying medication.

With this treatment, Tera says “things stayed quiet” for the next two years. Lily receives regular rheumatology care from Dr. Sarah Hoffmann at our Fredericksburg Multispecialty Center where she’s monitored closely for flare-ups and other issues by a specialized team. She also has periodic visits with ophthalmologist Dr. Evan Silverstein who monitors her for eye-swelling issues that can occur with Lily’s form of JIA. Having these services close to their Caroline County home helps ensure Lily doesn’t miss too much school and her parents don’t miss as much work for her appointments. (Both are teachers in Fredericksburg.) “We know other JA families that have to travel hours to see their doctors,” Tera says. “We are very thankful to have both of ours so close.”

Shot days

Lily Dance 1

Lily preparing for dance

Taking disease-altering medication long term can affect other body systems and after the two years an attempt was made to wean Lily off the oral medication. Unfortunately, within weeks her ankle flared, then her knees, and she soon reached point where she needed accommodations for pain during school and had to sit out in a dance class she was taking.

This time, neither steroid injections or oral medication provided relief, so her parents worked with her team to figure out what would. Lily now has two different medications injected weekly. The injection form ensures a higher amount of medicine is absorbed into her body. Both are given to her at home by her parents.

Saturdays are Lily’s “shot days.” They’re not always easy days for Lily, or for her parents. Sometimes both end up in tears and at times Lily experiences significant emotional anxiety. “She started developing a gag reflux to the smell of alcohol wipes in anticipation of her shots each week,” Tera explains. “She even threw up a few times as a result.”

Over the past year, they’ve found ways to cope. Lily’s big brother Aiden, 10, plays music and dances to distract her. He also sometimes shakes one of her legs as an injection is given because it helps with her pain. Lily’s found that having fun things to do right after helps, a tip she shares in a video message on the Lily’s Elves website. Dancing, singing and “most of all reading Harry Potter” are her current go-to activities for this.

Coming to realize the shots allow her to continue to do the things she loves – like play the piano and attend ballet and hip-hop classes – makes shot days a little more manageable. Her parents can see the medication helps Lily “feel like herself again” as now any moment of the day they’re likely to find their music-loving daughter happily singing or practicing dance moves. “The shots really hurt but they make the arthritis feel much better,” Lily admits.

Strong support

Being included in decision-making about Lily’s care is important to Ryan and Tera, and involving parents in this way is a focus of how Dr. Hoffmann practices medicine. Strong lines of communication are also important. “We expect to have a long relationship with her CHoR doctors and nurses so we appreciate they’ve taken time to get to know her and us,” Tera remarks.

Monica Utley, the rheumatology program’s nurse, works closely with Lily and her support comes in many forms. “Whenever we have a question or are unsure about something, all we have to do is send her a message and she gets the answers we need,” Tera says thankfully. Monica works with schools to educate them about her patients’ needs and makes efforts to attend Arthritis Foundation events. “It means the world to Lily to see the people who care for her at the doctor’s office supporting her outside that setting,“ Tera adds.

The local Arthritis Foundation chapter connected with Lily and her family very soon after her diagnosis and has also been source of a great support. Working on this organization’s behalf is a way to fight back against a disease that at times has made them feel powerless. “Lily and her family are amazing,” Monica says. “They advocate for all patients with arthritis.”

Twice in the last four years Lily has been the youth honoree at Jingle Bell Run events, one in Fredericksburg and one in Richmond, and last year Lily’s Elves contributed to $5,000 raised for Arthritis Foundation research. It’s a Saturday that’s a very special day for their family. “It’s a day we celebrate how far Lily has come in this journey and how strong she continues to be,” Ryan says.

The strength Lily has shown in working through pain – and bravely sharing her story – is truly inspiring. At such a young age she already has years of contributing to helping others, letting kids like her know they’re not alone in this struggle and working toward changing the landscape altogether someday for all children and families facing this condition.

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