Farmington toddler living with never before seen medical condition

Parents of a Farmington toddler born with a rare condition are turning to doctors in Boston, after multiple failed surgeries to remove a large growth on the child’s skull.

Haley and Alex McCullen have scoured the internet looking for doctors that can help their daughter Parker. The 18-month-old has a large nevus on her skull, the likes of which have not been documented in any modern medical journal.

"This was such a large and dramatic mass that we weren’t quite sure what it was," said Dr. Sheilagh Maguiness, a pediatric dermatologist with the University of Minnesota. "No one else had seen a similar case. We couldn’t find anybody with experience in this."

Haley had a very healthy pregnancy with no indication that anything was wrong. But at 37 weeks, she requested an ultrasound to ease her nerves. It was that decision that likely saved both of their lives and sent them down a road of uncertainty.

"My doctor called me and said, Haley, I don’t know how to tell you this. Your baby has a large mass on her head, neck or chest. We’re not sure what it is, but you need to see a specialist tomorrow," she recalled. "I think the first thing I said to her was, what are you telling me? She’s not going to make it is she?"

Dr. Maguiness said when Parker was born via emergency C-Section she was certain it was a grave prognosis. Much to the doctor’s surprise, lab results revealed the growth to be benign, describing it as a large mole.

Parker has undergone several surgeries to reduce the size of the growth but because of its proximity to the brain and vagus nerve, complete removal is extremely risky.

"This needs to be done just for the quality of her life," said Alex.

Doctors in Chicago attempted to remove the dangerous and uncomfortable growth when Parker was 5 months old, only to decide the procedure was too risky mid-way through.

Haley continued to search for anyone who could help, which led her to the team at Boston Children’s Hospital. Next month, she’ll undergo a 15-hour plus surgery with hopes of removing the majority of the growth.

"She was put on this earth for a reason, and it's our job as her parents to be her voice and advocate for her," said Haley.

Doctors have advised Alex and Haley that Parker will need to stay in Boston for several months to recover, which means Haley will be taking a leave of absence from work and paying for food and lodging to be near her.

To help ease the burden, their friends started "Pennies for Parker" to raise money. On Sunday, July 30 there will be a fundraiser at Valleywood Golf Course in Apple Valley from 3-6 p.m. Donations are also being accepted on the GoFundMe page.