James McCallum, 19 months old, was given the nickname “Turtle Boy” due to a rare skin condition that puzzled doctors.

According to his mother, Kaitlyn McCallum, 35, ultrasounds did not reveal anything unusual about James’ condition before his birth on August 19, 2021. However, Kaitlyn and her husband Tim, 41, became concerned when they noticed James’ back scabbing and developing lumps.

“It looked kind of like a birthmark but scabbed over in parts — it was a little concerning, as it looked like something was wrong,” Kaitlyn told South West News Service.

As the mark grew, resembling a large mole, his parents took him for tests and waited months for results. “The doctors didn’t really know what it was at that point,” Kaitlyn recalled. “It covered 75% of his back at the start, and it had started to get fattier and more lumpy. It seemed like it was growing.”

James was born with a rare skin condition that left him unable to sleep on his back. The condition baffled doctors, and James had multiple surgeries to remove the mass. His lump grew rapidly, becoming so cumbersome that he had to sleep on his side. “[It] had become like a turtle shell on his back,” Kaitlyn explained. “He couldn’t put his head down flat because it was so bulky.”

James had his first surgery to remove the nevus in February 2022, first undergoing an MRI on his brain and spine to assess whether it was growing internally. Fortunately, there was no internal growth, and his parents started the process to remove the mass, with doctors testing the removed skin for diseases after his first surgery. The results came up negative.

Worried the mass could grow back, Tim and Kaitlyn joined a Facebook group to connect with other people living with the condition. This connection opened their eyes to other symptoms and side effects, such as itchiness and not producing sweat glands.

After connecting with a specialist in Chicago, James’ parents decided to start tissue expansion in September 2022, which involves growing the “good” skin surgically. “You can do the expansion process from home,” Kaitlyn said. “The expanders are placed under the skin by the doctor and then we inject them with saline once a week, and it slowly expands the good skin which replaces the nevus.”

James is now much happier and more comfortable, and his parents are hopeful that all of it will be gone by the summer. His back is healing well, and he will be left with minimal scarring. Kaitlyn and Tim are thankful it occurred on his back, as it usually occurs on the face.

“Having this removed will give him the best quality of life. He’ll be able to tell a cool story about it and say it’s a shark bite or something,” Kaitlyn pointed out. “We will definitely take the scarring over having to deal with this any day.”