Rare disorder strikes Topeka girl without warning

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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, before the symptoms of Rett Syndrome become more severe.

The vibrant four-year-old has quite the reputation around the building for saying "thank you" in only a way that she can.

"Even if you're having a rough day, she will at some time lock eyes with you and give you the best smile ever and it will light you up inside. She's a huge joy to have around," said Alisha Delgado, Lucy's Speech Language Pathologist and Feeding Specialist.

Shanna says TARC’s work with Lucy is a lifeline for the entire family and will continue to be as they travel down the unexpected path of having a child with disabilities.

“All the sudden that job description (as a parent) is rewritten for you. You’re looking at a job description now in a foreign language with 100 more pages to it. That’s what TARC really helped us with, is go through that job description and help us make sense of it.”

Shanna says TARC was instrumental in teaching her family how to communicate with Lucy. Since she doesn’t speak, the family has learned several new techniques using eye contact and body language to “talk” to their daughter.

Lucy is just one of hundreds of local children who benefit from TARC’s Children’s Service Programs. If you would like to help children like Lucy who have developmental disabilities, and their families, you can donate to Chris Fisher’s “Just a Buck” campaign.

As the name implies, Chris is asking for just one dollar, and if you’d like to help, send your donation to:

Just A Buck
c/o WIBW-TV
631 SW Commerce Pl.
Topeka, KS 66615.

You can also make a secure online donation at tarcinc.org/justabuck.