Three young brothers in Indiana have been diagnosed with the same rare brain abnormality.
In an interview with ABC affiliate WRTV airing Friday, Sept. 27, parents Ron and Whitney Niece talked about their family’s journey with Chiari malformation after their three sons — Lincoln, Norrin and Remley — were diagnosed with the condition and had to are to undergo surgery.
According to the Mayo Clinic, a Chiari malformation is “a condition in which brain tissue extends into the spinal canal” because part of the skull is misshapen or too small. Many people with this abnormality never show symptoms or need treatment. However, those with symptoms usually have headaches, neck pain, balance disorders, dizziness, and problems swallowing.
Less common symptoms include tinnitus, slow heart rate, scoliosis and breathing problems.
Hospital bed (photo).
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“It’s pretty scary. There’s no doubt about it,” Ron told the release of his sons’ diagnoses, adding that he trusted doctors at nearby Riley Children’s Hospital in Indianapolis to “make the right decision” once Lincoln, Norrin and Remley’s symptoms worsened.
You just go numb and go on autopilot, Whitney added. “But that doesn’t make it any easier emotionally. Sending your child to surgery.”
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According to an interview from March 2024 Greenfield Daily ReporterLincoln, Norrin and Remley – who were 10, 5 and 2 at the time – underwent “multiple procedures and surgeries” in a short period of time. The media reported that Remley became ill in June 2022 and was later diagnosed with Chiari malformation.
Meanwhile, Lincoln started having headaches when he was about 5 years old, but they were ignored because of his congenital heart defects. He too was diagnosed with Chiari malformation in February 2023 and was scheduled for surgery the following month.
Around the same time, Remley’s symptoms worsened and he was scheduled for surgery in August 2023. In the midst of Remley’s surgery, Norrin began having headaches and underwent surgery himself in January 2024.
The surgery, called a Chiari malformation decompression, involves removing part of the skull to “kind of free up the area,” Whitney said. Greenfield Daily Reporter.
According to the newspaper, Norrin and Remley experienced complications after surgery that required them to be monitored for some time.
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At the time, Whitney told the newspaper that her sons did not have any additional surgeries or procedures, but had to follow the “two-feet-on-the-ground rule” to avoid hitting their heads.
In a family interview with WRTV, Lincoln credited the hospital with saving his life “in a way that I wouldn’t be here doing this right now.”
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The nieces are currently participating in the Extra Life fundraiser, which is a program of Children’s Miracle Network Hospitals. Ron’s fundraising page, which says this is his 12th year with the charity, supports Riley’s Children Foundation. So far, he has raised $1,869 of his $5,000 goal.
“As many of you know, this past year has been a pretty crazy year for our family. Three brain surgeries in one year is a long and difficult journey for any family, but we made it through with the love and support of our family and friends,” Ron wrote of the fundraiser in a Facebook post on Sept. 11. “We’re raising money for the Riley Children’s Foundation of Indianapolis. We’ll be playing 24 hours straight on November 3rd!”
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Source: HIS Education