“You just kind of become numb and go into autopilot,” mother Whitney Niece said of her children’s health journeys
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Female doctor with a purple awareness ribbon for Chiari malformation (stock image)
Three young brothers in Indiana were all diagnosed with the same rare brain abnormality.
In an interview with ABC affiliate WRTV published on Friday, Sept. 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 with the condition and had to undergo surgery.
According to Mayo Clinic, Chiari malformation is “a condition in which brain tissue extends into the spinal canal” due to a portion of the skull being misshapen or too small. Many people with the abnormality never exhibit symptoms or require treatment. However, those with symptoms commonly experience headaches, neck pain, imbalance, dizziness and trouble with swallowing.
Less common symptoms include tinnitus, slow heart rhythm, scoliosis and breathing issues.
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A hospital bed (stock image)
“It’s pretty scary. There is no doubt about it,” Ron told the outlet of his sons’ diagnoses, adding that he trusted the doctors at nearby Riley Hospital for Children in Indianapolis to “make the right call” once Lincoln, Norrin and Remley’s symptoms worsened.
“You just kind of become numb and go into autopilot,” Whitney added. “But it doesn’t make it any more emotionally easy. Sending your kid off into surgery.”
Per a March 2024 interview with the Greenfield Daily Reporter, Lincoln, Norrin and Remley — who were 10, 5 and 2 years old, respectively, at the time — have undergone “multiple procedures and surgeries” over a short span of time. The outlet reported that Remley fell ill in June 2022 and was later diagnosed with Chiari malformation.
Meanwhile, Lincoln began having headaches when he was around 5 years old, but they were overlooked due to his congenital heart defects. He too was then diagnosed with Chiari malformation in February 2023 and scheduled for surgery the following month.
Around the same time, Remley’s symptoms intensified and he was scheduled for surgery in August 2023. Amid Remley’s surgery, Norrin began to have headaches and underwent surgery himself in January 2024.
The surgery, called Chiari malformation decompression, involves removing a piece of the skull to “sort of disimpact the area,” Whitney told the Greenfield Daily Reporter.
According the outlet, Norrin and Remley experienced complications after the surgery which required them to be monitored for an additional amount of time.
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At the time, Whitney told the outlet that her sons were clear of any additional surgeries or procedures, but needed to follow 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 doing this.”
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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 states that this is his 12th year with the charity, is in support of Riley’s Children Foundation. He has so far 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, hard journey for any family to undergo, but we made it through with the love and support of our family and friends,” Ron wrote about the fundraiser in a Sept. 11 Facebook post. “We are raising money for the Riley Children’s Foundation of Indianapolis. We will be gaming for 24 hours straight on November 3rd!”
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