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.”

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