Rare disorder strikes Topeka girl without warning

TOPEKA, Kan. (WIBW) Rett Syndrome is a disorder that strikes children without warning. What makes matters worse, is that parents can go six months to over a year thinking they have a happy and healthy child before symptoms appear out of the blue.

“We had so many plans and dreams for Lucy,” said her mom Shanna. “The things you would typically hope for as you are raising a young child as you turn them into a beautiful adult, and the experiences you have as a parent, you lose that. You don’t have that.”

Shanna and her husband Sam had no reason to believe there was anything to worry about after their daughter Lucy arrived, especially after Lucy cruised through her first year of life hitting all milestones a young girl should.

But, that promising start would come to a screeching halt shortly after Lucy turned 14-months old.

“I asked my husband if he heard Lucy say any words recently because she seemed to have lost some of her words. I also noticed she was playing with toys differently than she use to,” said Shanna.

Those changes eventually led to Lucy being diagnosed with autism at the age of two.

Sadly, Lucy’s parents would have wished their daughter *just* had Autism after finding out what she was really dealing with. After another year of regression, and more tests, doctors finally discovered Lucy had Rett Syndrome.

“Generally they start losing more of their skills. They have more difficulty swallowing and eating. The neurologist we just saw told us that she would probably lose her ability to walk by her teens,” said Shanna.

While the long term prognosis is bleak, a team of specialists from TARC work with Lucy to make sure her quality of life is as good as it can be,…

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