For the first 20 months of her life, Lily lived a healthy life. Then, in March of 2020, she began having persistent fevers and rashes. Her mother, Diana, became deeply concerned, and took her to her pediatrician, and eventually to urgent care and a local emergency room.

Initially, Lily’s doctors diagnosed her with routine illnesses such as ear infection and hand, mouth and foot disease, but Diana believed something else was happening.

By the 10th day of her illness, Lily couldn’t turn her head or walk on her own. Her pediatrician sent her to the emergency room at Johns Hopkins Children’s Center. Diana says, “I remember panicking and feeling so helpless watching her and all the staff coming in and out of her room. I could just sit there, cry and pray.” Johns Hopkins doctors told Diana they wouldn’t let her leave until they had all of the answers she needed — a reassurance she was thankful to have.

Tests revealed life-threatening inflammation throughout Lily’s body, and she was diagnosed with systemic juvenile idiopathic arthritis, a rare subtype of juvenile arthritis that affects one or more joints and can cause inflammation of some internal organs. Lily also developed a secondary, life-threatening complication called macrophage activation syndrome, which overwhelmed her immune system and caused damage to her heart valve, spleen, and surrounding tissue.

Doctors acted fast and administered blood transfusions along with high doses of intravenous steroids and other medication to help Lily’s body fight the inflammation attack. After a few days of stabilizing treatment, Lily’s symptoms were reduced.

During her remaining stay at the Children’s Center, Lily received donations of homemade blankets, toys and games from the Children’s Center Child Life Department to help her feel at home, as well as visits from volunteers who sang and played music for the children. Over time, she began to recover enough to laugh and play. “We could see Lily coming back to us,” Diana remembers. After a 16-day stay, Lily was able to go home.

Lily’s treatment management required ongoing medications and injections, which have reduced over time. She was followed up by her cardiology team for a year before being cleared of her heart issues, and she continues to see her pulmonology, rheumatology and ophthalmology doctors. Lily has had occasional inflammation flareups, but doctors immediately stepped in to prevent them from worsening. “There is a level of comfort knowing that she’s in good hands, and I trust their decisions on how to take care of her,” Diana says.

Today, Lily is a wild 6-year-old who loves riding horses and playing with her dolls — something that seemed far away from when she first arrived at the Children’s Center. “Hopkins really gave us hope,” says Diana, “and that is priceless.”