Three young brothers in Indiana are diagnosed with the same rare brain disorder: ‘It’s pretty scary’

“You just kind of become numb and go on autopilot,” said mom Whitney Niece of her children’s health journeys

Three young brothers in Indiana were all diagnosed with the same rare brain disorder.

In an interview with ABC affiliate WRTV published on Friday, September 27, parents Ron and Whitney Niece opened up about their family’s journey with Chiari malformation after their three sons – Lincoln, Norrin and Remley – were diagnosed and required surgery . .

According to Mayo Clinic, Chiari malformation is “a condition in which brain tissue extends into the spinal canal” because part of the skull is malformed or too small. Many people with the condition never show symptoms or require treatment. However, people with symptoms often experience headaches, neck pain, imbalance, dizziness, and difficulty swallowing.

Less common symptoms include tinnitus, slow heart rhythm, scoliosis and breathing problems.

“It’s quite scary. There’s no doubt about it,” Ron told the outlet about his sons’ diagnoses, adding that he trusted doctors at nearby Riley Hospital for Children in Indianapolis to “make the right decision” once Lincoln, Norrin and Remley fell ill were. symptoms worsened.

“You just kind of go numb and go on autopilot,” Whitney added. ‘But it doesn’t make it any easier emotionally. Sending your child to the operating room.’

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According to a March 2024 interview with the Greenfield daily reporterLincoln, Norrin and Remley – who were 10, 5 and 2 years old respectively at the time – underwent “multiple procedures and surgeries” in a short period of time. The newspaper reported that Remley fell ill in June 2022 and was later diagnosed with Chiari malformation.

Meanwhile, Lincoln developed headaches when he was about 5 years old, but these were overlooked due to his congenital heart defects. He was also diagnosed with Chiari malformation in February 2023 and was scheduled for surgery the following month.

Around the same time, Remley’s symptoms increased and he was scheduled for surgery in August 2023. During Remley’s operation, Norrin developed a headache and underwent surgery himself in January 2024.

The surgery, called Chiari malformation decompression, involves removing a piece of the skull to “kind of dislocate the area,” Whitney told the Greenfield daily reporter.

According to the newspaper, Norrin and Remley experienced complications after the operation, requiring additional monitoring.

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At the time, Whitney told the newspaper that her sons would not undergo any additional surgeries or procedures, but that they would have to adhere to a “two feet on the ground” rule to avoid hitting their heads.

In the family’s WRTV interview, Lincoln credited the hospital with saving his life “in a way that I wouldn’t be here right now to do this.”

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The Nieces are currently participating in the Extra Life fundraiser, a program of Children’s Miracle Network Hospitals. Ron’s fundraising page, which states this is his twelfth year with the charity, is in support of Riley’s Children Foundation. He has raised $1,869 of his $5,000 goal so far.

“As many of you know, the past year has been a pretty crazy one for our family. Three brain surgeries in one year is a long, hard journey for any family, but we got through it thanks to the love and support of our family and friends,” Ron wrote about the fundraiser in a September 11 Facebook post. “We’re raising money for the Riley Children’s Foundation of Indianapolis. On November 3 we will be gaming for 24 hours!”

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