Sep 27, 2024
GREENFIELD A rare brain and skill abnormality is making itself known to one family in Greenfield.All three Niece brothers have Chiari Malformation. Essentially it's extra brain matter that goes past the skull. It can cause several issues, from sickness to headaches, and even balance problems. It's a rare condition. According to the American Association of Neurological Surgeons, less than 1,000 people have it around the world. "It's pretty scary. There is no doubt about it. You just put your trust in the Riley physicians and the team there that they're going to make the right call," Ron Niece, the boys' father said. But despite this condition, the boys live pretty normal lives. Inside their home in Greenfield, it's your typical home filled with boys. Monster trucks, video games, Lego flowers for mom, and laughter and squeals. Lots and lots of laughter. It's no secret the niece's family home can get a bit wild at times. But to understand why all the play time is so sweet for this family, you have to understand what it took to get here. "We've done heart surgeries, brain surgeries," Ron said. All three boys, Lincoln, Norrin, and Remley, have matching scars. All had to undergo the same brain surgery. " You just kind of become numb and go into autopilot," mom Whitney Niece said. "But it doesn't make it anymore emotionally easy. Sending your kid off into surgery."But with surgery to decompress their skills, the boys can live like any other kid. "They saved my life in a way that I wouldn't be here right now doing this," Lincoln said. The matching scars are a reminder of what it took for them to get to where they are today. "They all have this nice little zipper on the back of their head. The two youngest have, you can't see unless they have. There's a tube that goes all the way right here it's up here in their head. But that's it," Whitney said. Chiari Malformation can be genetic and the Niece family is still waiting for the final word on whether theirs is. Their family is hoping that sharing their story will show other families going through complex medical challenges to keep pushing forward. Chiari is a chronic condition that can be diagnosed, but doctors say it's very rare they find it. Some people can have it with no symptoms at all.
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