Nebraska
Nebraska family talks about childhood disorder as governor promotes awareness
/cloudfront-us-east-1.images.arcpublishing.com/gray/G3IZXWZAS5FBHJW5NQ3G3OXBZI.JPG "Nebraska family talks about childhood disorder as governor promotes awareness")
OMAHA, Neb. (WOWT) – Earlier this month, Gov. Jim PIllen signed a proclamation declaring June 30 as an awareness day for arthrogryposis multiplex congentia, a rare disorder that impacts just one in 3,000 newborns.
Behind that proclamation request was Sahra Niazi, a pediatrician in Lincoln, whose daughter was born with the disorder, called AMC for short.
“When Zara was born, even as a pediatrician, I had no idea what this diagnosis would mean for me and my family,” Niazi tells 6 News.
Zara’s diagnosis was a complete surprise. Niazi’s pregnancy was as normal as her first two.
“I always said she was moving mountains inside of me,” Niazi says.
It wasn’t until the end of her pregnancy that things shifted.
“A week or two before she was born, I remember thinking, ‘She’s just not moving as much, is that OK?’ and I was just about due, at my due date.”
At her birth, doctors realized Zara had joint stiffness and muscle weakness, likely a result of her not properly moving while in utero, which is what is believed to cause AMC.
“Because of that decreased movement, they don’t develop the muscle and joints to be able to ambulate or use their arms and legs as other children and adults do,” Niazi says.
AMC is a disorder, not a progressive disease.
It’s so rare, however, that when Zara was born, Niazi, her colleagues, and many of her doctors had little to no knowledge about the disorder, and have had to learn more about it over time.
Niazi says she felt what many parents feel upon finding out that their child has a disability — heartbreak, confusion, uncertainty, and more.
“As we went through the first weeks of her life and the first months of life it was an incredibly scary process in thinking that I wasn’t sure what to expect for my daughter and what her future would hold.”
As Zara has grown up, Niazi says those feelings have faded and she feels nothing but joy, appreciation, and thankfulness for her daughter.
But since so little about the disorder is known, she’s made it her mission to raise awareness and be an advocate for those who have it.
This month, her AMC Awareness Day proclamation request was approved and signed by Gov. Pillen.
“That feeling to know that we were there to have the connection with Gov. Jim Pillen and then just to have him stand up front at the podium and say we declare June 30th National AMC Awareness Day for the State of Nebraska — I thought that was really cool.”
Niazi has also made it a point to be a support for other families with children with special needs, both as a parent and a pediatrician.
“I am very, very happy to share that despite a disability, your child is going to do wonderful, they are so resilient they are so powerful in how they are able to overcome obstacles, and more than that, I just want people to understand that being disabled doesn’t mean unable. Being different doesn’t mean she should be treated differently.”
She says for families who welcome a child that isn’t what they expected, she has this message:
“Everything is going to be fine. You have to process your emotions, but congratulations. You have a child who is beautiful and who is going to add to your life. There’s going to be ups and downs like any other child, and their life might look different, but take a step back and feel your emotions, it’s OK. But at the end of the day, I promise everything will be fine.”
Copyright 2023 WOWT. All rights reserved.
LINCOLN, Neb. (KLKN) — Early childhood education is taking flight thanks to a statewide Pilot Program.
The Nebraska Department of Education teamed up with the Nebraska Children and Families’ Foundation, the Statewide Family Engagement Center and Unite for Literacy to provide communities with access to numerous books.
The program focuses on enhancing the literacy of young children by providing a wide array of books to communities across the state.
The Vice President of Early Childhood Programs at Nebraska Children and Families Foundation, Stephanni Renn, told Channel 8 this has had a huge impact on younger generations.
“Kids have more access readily available because of their childcare centers and their school districts,” she said. “We do different assessments on our kids, and one of those is the ECI, which is the Early Communication Indicator. Those kids that were receiving books in their home, scored at benchmark under language practices because families are reading more, they’re choosing books and they have access to books.”
The Executive Director of Educare, Quentin Brown, said having a diverse selection of books helps keep kids interested in reading.
“To think that people can come in and naturally and organically say ‘Oh! There’s a book that looks like me, there’s a book that sounds like me, there’s a book that expresses an interest that I’m interested in,’” he said. “So what we’ve seen is that there has been a natural desire as people pass through our lobby. There’s a natural desire to just pick up books and read and engage with them and it’s a special thing when it’s someone with a child.”
Renn said one of the best parts about the program is the easy access for families.
“If you scan the front page of this book, it takes you to our digital library,” she said. “And so then you can read the book in various languages. So maybe if I’m an ESL parent, and English isn’t my first language, I can listen to it in Spanish, I can listen to it in Korean, whatever language I am more comfortable in and then I can also have it in English. So it really is access to books and it’s about shared reading and hoping that families choose books.”
And Brown adds that the program is very inclusive for every community.
“One of the important aspects is that children and families have an opportunity to engage in their home language and in their culture and I think that’s a special thing,” he said.
OMAHA, Neb. (WOWT) – Behind a complete game from Jordy Bahl and power hitting from Hannah Camenzind, Nebraska softball topped Tennessee, 5-2 in Game One of the Knoxville Super Regional.
With a win in Saturday’s Game Two, the Huskers would clinch a berth in the Women’s College World Series for the first time since 2013.
In a game featuring two of the best pitchers in the sport, Nebraska wasted no time getting to Karlyn Pickens. Facing the SEC Pitcher of the Year, Olivia DiNardo struck a base hit up the middle to score Bahl with the first run of the game.
Tennessee countered in the bottom of the second. Sophia Nugent took Bahl deep to knot it up, 1-1. The solo shot ended the Papillion native’s streak of 10 consecutive scoreless innings.
Nebraska went back on top in the third thanks to a Samantha Bland double that scored Bahl from first. Camenzind added insurance in the fourth with a mammoth solo homer. The Skutt Catholic alum started a Big Red rally. With two on and two out, Jordy Bahl skied a fly ball to shallow left center that fell between to Vols. Pickens exacerbated the error with a throw home that went to the backstop, allowing two Huskers to score to make it a 5-1 game.
In the circle, Bahl went the distance, hurling seven innings, allowing two runs on seven hits while striking out six.
Nebraska and Tennessee square off Saturday at 4:00pm. The Vols need a win to force a winner-take-all Game Three on Sunday.
Copyright 2025 WOWT. All rights reserved.
Nebraska State Patrol
Today, members of the Nebraska Legislature voted to confirm the appointment of Colonel Bryan D. Waugh as Superintendent of Law Enforcement and Public Safety for the state of Nebraska.
Colonel Waugh was appointed by Governor Jim Pillen to serve as the 19th Superintendent of the Nebraska State Patrol. He will begin his service with NSP on June 2, 2025.
“I’d like thank the members of the Nebraska Legislature for their confirmation vote today,” said Colonel Waugh. “I believe that the future is bright for the Nebraska State Patrol and I’m eager to join this talented team of men and women serving our state. Together, we will serve with integrity, dedication, and a shared mission to keep Nebraska safe.”
Colonel Waugh has most recently served as Chief of the Kearney Police Department. He has 32 years of experience in law enforcement, including service within Kearney PD, La Vista PD, and the United States Air Force.
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