Georgia 4-year-old's eyelid rash leads to medical mystery

ALPHARETTA, Ga. - At just 4-years-old, Mila Sherry loves reading picture books with her mom, Anna Sherry.

But, for the past year, the Alpharetta preschooler has been living a story of her own, a kind of medical mystery.

It began in November 2022, when Mila developed an angry red rash on her eyelids right before her third birthday.

At the time, Anna says she had been acting like a typical two-year-old.

"I mean, she was chasing her brother, everything was good," her mother remembers. "And, then, all of a sudden, this rash appears on her eyelids."

Her daughter told her the rash on her eyelids hurt.

"It just kept spreading, bigger and bigger," Anna says. "It went down her cheeks, then went to her whole body, and we took her to the dermatologist. They kept prescribing creams, lotions, steroid creams, everything."

Nothing seemed to work, she says.

For months, they thought Mila had eczema, or allergies.

But she was also growing weaker, unable to keep up with her brother, or even climb the stairs.

"We were like, 'Maybe she's just being a toddler, and she's just being childish, or she just wants us to carry her everywhere,'" Sherry says. "But now, she can't even walk up the stairs. And that was really sad to see."

For six months, she says, her family tried everything.

"Then, finally, when I took her back to the pediatrician and I just needed some answers, that's when, that week, we found out," Anna Sherry says.

The doctor ran some blood tests.

"The blood work showed that her muscle enzymes were off the charts," Mila's mother says.

Very high muscle enzymes can be a sign of inflammation in the body or muscle injury.

Mila's doctor sent the Sherry's to Children's Healthcare of Atlanta, where Mila was diagnosed with juvenile dermatomyositis, or JDM.

Dr. Christian Oliveros, a pediatric rheumatology fellow at Children's Healthcare, is part of the team treating Mila for JDM, which can attack the skin, muscles and blood vessels.

"It is a very rare rheumatic disease that affects the skin and the muscles of particularly young children," Dr. Oliveros says.

JDM affects about 3,000 to 5,000 children in the U.S.

"It is a disease that sometimes takes months, to even sometimes years, to be formally diagnosed, depending on when rheumatology gets involved," Dr. Oliveros says.

Kids with JDM often develop muscle weakness that can make it hard for them to function.
 
"They start slowing down," Oliveros says. "They start saying, you know, "Mom, Dad, it's more difficult to climb the stairs than it used to be,' or, 'Can you take me to the bathroom?'"

"She was in the hospital for a week at Children's Healthcare of Atlanta, and we had to do steroids. [They] started her methotrexate injections, and then IVIG infusions," Anna Sherry says.

The goal of the treatment, Dr. Oliveros says, is to dampen down Mila's immune system, which has kicked into overdrive, and is causing severe inflammation.

"It's a little bit too overactive, too hyperactive, and it's not working correctly," he says.

Mila Sherry has been under treatment for nine months.

"It's been a rough journey," her mother says. "It's not easy. The IVIG infusions are 10 to 12 hours each time. And for a toddler to sit there for that long, it's just … that's not easy."

Mila is coming off the steroids, and Anna Sherry hopes, like many children with JDM, Mila will go into remission after a year or two of treatment.

"She's doing a lot better," she says. "So, we are hopeful that it keeps getting better."

Dr. Oliveros is also hopeful, saying Mila's response to treatment after just a few months has been "incredible."

"She's going to be just like any other kid her age," he says. "The only difference is she's on a few medications."