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While It's Rare, Local Mom Wants You To Be Aware Of Turner Syndr - Valley News Live - KVLY/KXJB - Fargo/Grand Forks

While It's Rare, Local Mom Wants You To Be Aware Of Turner Syndrome

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Being told there's something wrong with your new born baby is every parent's nightmare. A local mom, Kaylie Bekkerus, knows that feeling all too well. She says it is even worse to have your child grow up not knowing something is wrong. February is turner syndrome awareness month. 1 out of 2,500 girls are diagnosed with the condition. While it is rare the health complications are serious, and often it goes unnoticed until puberty.

Ellie is 3 and a half, and about to start pre-school. Most people won't be able to notice, but she's been diagnosed with turner syndrome.

"What did I do wrong, what did I eat wrong, what activities shouldn't I have been doing," says Bekkerus, "I Googled it right away, and I was like, why us?"

It's caused by a missing or incomplete sex chromosome resulting in a variety of medical conditions in women.

"We just found out that she has another heart issue that has come on since she was born, they are going to have kidney issues," says Bekkerus, "There are going to have infertility issues, growth problems."

Ellie had a hysterectomy when she was 10 months old, so she will never be able to have children of her own.

"Ellie will have to have heart surgery on her heart someday, but right now we are in clear standings and don't have to do anything yet," says Bekkerus, "The longer we can hold out the better."

Ellie has been fortunate because doctors caught it so early.

"It isn't the end, it's something that at first, what did I do?" says Bekkerus, "But obviously there's nothing that you could have done, nothing to prevent it."

There's no known cure, but it's important to catch it before puberty because doctors worry most about heart complications

"Different signs would be broad shoulders, short stature, wide set neck, tilted back ears," Bekkerus explains, "Some have orthodontic issues, some eye issues, hearing issues, different things that can come about that you need to look for."

While turner syndrome is rare this mom wants you to be aware of the warning signs. There are multiple tests doctors can perform to diagnose turner syndrome. Nearly all girls that have that have it need ongoing medical care, but most can lead relatively healthy independent lives.

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