Three young Indiana brothers who suffer from frequent headaches have all been diagnosed with the same rare and serious condition, according to the parents of the boys, who recently opened up about their health problems.
Experts say Lincoln, Nolin and Lemley's nieces have matching scars on the back of their heads after undergoing surgery for Chiari malformation, which affects just under 1 in 1,000 people worldwide.
This condition occurs when the brain in the back of the skull extends through a normal opening to the spinal cord. According to John Hopkins Medicine.
Symptoms include side effects such as neck pain, unsteady gait, poor hand-eye coordination, and dizziness. According to the Mayo Clinic.
The boys, who live in Greenfield, suffered from frequent headaches and vomiting before they were diagnosed.
'It's pretty scary,' says the children's father, Ron Nice. he told WRTV on Friday. “There's no doubt about that.”
All three siblings underwent surgery, each time leaving the family emotionally exhausted.
“He becomes numb and goes on autopilot,” his mother, niece Whitney, told officers.
“But it doesn't make you feel any better mentally. You're sending your child off for surgery.”
Lemley was the first niece to be diagnosed with the condition in June 2022, but did not require surgery at the time. According to the Greenfield Daily Reporter, The family was interviewed in March 2024, when Lincoln was 10 years old, Norrin was 5, and Lemley was 2.
Lincoln reportedly began suffering from headaches at the age of five, which were initially thought to be related to a congenital heart defect. Then, in February 2023, a CAT scan revealed that he also had Chiari malformation, and he underwent surgery the following month.
Lemley continued to suffer, including an accidental fall, and went under the knife in August 2023. That same month, news outlets reported that Nolin began experiencing headaches before undergoing surgery in January.
Dr. Laurie Ackerman of Riley Hospital for Children performed each surgery, called a Chiari malformation decompression, to remove a small piece of the back of the skull and a 3-by-3-centimeter piece of bone.
“The purpose of all of this is to remove some kind of local impact,” Ackerman told the Greenfield Daily Reporter. “It's so that the liquid can move through it properly.”
Norrin and Lemley subsequently experienced complications and had to have a shunt placed to allow excess brain fluid to be distributed to their abdomens.
She noted that it is unusual for all three children in the same family to have this condition. Doctors and scientists are conducting research to determine whether blood washing malformation is hereditary.
The youngsters have improved significantly and are mostly “typical kids,” Whitney said, but with a few key exceptions, they don't hit heads.
“Like the other day, when it was really nice outside and everyone else was able to go out and ride things, Norrin couldn't do that and was standing in the garage crying.” she said.
According to the Mayo Clinic, many people with neurological problems do not experience symptoms and do not always need treatment.
Parents have been speaking out to raise awareness and working to help other families in their shoes.
“So if I can help another child who may be suffering from a headache but is being ignored over and over again, that's a win in my opinion,” Whitney told the newspaper.
