Meet Addilyn Byrd

When Addilyn Byrd was just 3 years old, she began to show symptoms of an allergic reaction around her eyes. Then, a little before Thanksgiving, her parents noticed their otherwise healthy little girl always looked flushed.

After many doctor and hospital visits, Mark and Amanda Byrd knew they weren’t dealing with allergies, eczema or dermatitis. Something was wrong.

By January, Addilyn’s muscles were so weak that she couldn’t carry a 20 oz. bottle. “And then she got to where she couldn’t go more than 10-15 feet without being carried,” says her mom, Amanda Byrd. She was red, swollen and weak, but no one seemed to have an answer.

Frustrated, Addilyn’s dad posted about her symptoms on Facebook. A friend with an autoimmune disease saw the post and sent Mark some articles. They sounded all too familiar, so Mark and Amanda asked Addilyn’s doctor in Dardanelle to run some blood tests.
The results confirmed the family’s growing suspicions—Addilyn had a rare autoimmune disease called juvenile dermatomyositis (JDM).

Then Addilyn’s doctor referred the Byrds to Arkansas Children’s Hospital.

“Dr. Sukesh and his nurse were amazing,” Amanda says of Dr. Sukesh Sukumaran, a rheumatologist at Arkansas Children’s Hospital. “It’s by the grace of God that Dr. Sukesh is here.”

Because juvenile dermatomyositis is so rare—diagnosed in approximately two to four children in a million in the U.S. each year—it is often misdiagnosed. The disease causes muscle inflammation and weakness hindering a child’s ability to walk, run, jump, climb stairs or even sit up. If left untreated, it affects the organs, especially the heart and lungs. Along with muscle weakness, JDM causes inflammation in Addilyn’s skin, which appears as a rash on her elbows and knees.

To keep her JDM from flaring up, Addilyn avoids sunlight, which can trigger inflammation, and takes daily and weekly medications at home. Every month, she stays at ACH overnight and receives a mix of steroids and intravenous immunoglobulin therapy. And every three months, she receives a chemotherapy treatment. Addilyn also sees Dr. Brita Rook, an ophthalmologist at ACH, who watches for inflammation in her eyes.

“We’ve learned a lot and we’ve learned what a new normal is,” says Amanda. Still, navigating their “new normal” can be challenging. “Addilyn screams and cries every time she has an IV put in,” she says. But the nurses do everything they can to calm her fears, sending Addilyn home with presents from the toy closet and inviting her to special activities around the hospital. Visiting the therapy dogs at Camp Wannaplay also takes Addilyn’s mind off of painful needle sticks.

Thanks to her treatments and care team at Arkansas Children’s, the “sassy” 4-year-old leads a fairly typical life these days. She loves to be the boss, even though she’s the youngest of four siblings: Cailynne, 14, Briana, 14, Alex, 10, and Sophie, 9. She loves to sing, cheer and play “superheroes.” Her superhero Buddy Bear goes everywhere Addilyn goes—he hasn’t missed a hospital visit yet.
While there is no cure for juvenile dermatomyositis, Addilyn’s family is grateful for the doctors and nurses at ACH who fight to keep her disease in remission. “Honestly, the rheumatologists at ACH saved my baby’s life,” says Amanda. “There’s no other place I’d want to send my baby than Arkansas Children’s.”

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