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Living with Rett Syndrome

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Posted: Saturday, October 6, 2012 8:33 am | Updated: 8:51 am, Sat Oct 6, 2012.

Brenna Kuk toddles around the house, chattering and smiling like most 3-year-olds. Her hands and arms are always in motion.

Her bouncy brown hair is pulled back from her round face. She wears striped leggings and a colorful shirt that complement the blue frames on her glasses.

But although Brenna looks like a typical 3-year-old child, she isn’t.

A disorder has robbed her of normal speech, cognitive and motor skills — and even emotions.

So while she does chatter, she isn’t able to form words. And while she does walk, she can’t climb stairs on her own. And while her arms and hands are in motion, she can’t hold a cup or feed herself. And while she does recognize her parents and grandparents, she doesn’t play with other children or the toys stacked in the corner of the living room.

Still, Brenna’s parents, Scott Kuk and Nicole Hrabanek of Norfolk, are happy that their daughter is able to function as well as she does considering she has Rett Syndrome.

Some children with Rett Syndrome need braces to sit up, can’t or won’t eat, cry or scream for no apparent reason and exhibit other symptoms, Hrabanek said.

“Some kids (with Rett Syndrome) can only walk four or five steps . . . because it hurts too much,” Kuk added.

While learning that their daughter has Rett Syndrome was devastating, Hrabanek said it was almost a relief to put a name to what was ailing her.

Hrabanek had a normal pregnancy, and Brenna’s birth was routine. At first, life was what it should be with a newborn — late-night feedings, dirty diapers and everything else.

But when Brenna was just 10 months old, she contracted E. coli by touching a farm animal. At first, physicians diagnosed her with the flu. By the time they realized she had E. coli, she was near death, Hrabanek said.

Brenna spent weeks at Children’s Hospital in Omaha fighting for her life. Once she was well, the family came home expecting to live a normal life.

But life was anything but normal.

Although Brenna grew and developed as she should during the first 6 months of her life, by the time she was a year old, “she wasn’t walking or talking,” Hrabanek said.

Afraid that the E. coli had done more damage than they thought, Hrabanek and Kuk once again took their daughter to specialists in Omaha.

The doctors examined her and did a multitude of tests and found nothing unusual.

Undaunted, the couple recently turned to a geneticist who took one look at Brenna and knew she had Rett Syndrome, Hrabanek said.

According to the Mayo Clinic, Rett Syndrome is a “rare genetic disorder that affects the way the brain develops.”

It can be passed through the mother, or it can be just a genetic mutation, Hrabanek said. While it can affect both boys and girls, only girls survive. A form of autism, Rett Syndrome can cause problems with movement, coordination and communication. There is no cure.

Although she’s doing better than some other children with Rett, her situation could change, Hrabanek said.

It’s not uncommon for children with the disorder to refuse to eat as they age and have to be fed with a tube. They can develop muscle weakness and scoliosis (unnatural curvature of the spine), mobility issues, breathing problems and more.

Now, Brenna goes to preschool where she receives physical and speech therapy. Her parents work different shifts so one of them can be home with her whenever possible. Grandparents help, too.

But finding qualified caregivers is a challenge, said Vicki Hrabanek, Brenna’s grandmother.

No one knows what Brenna’s future holds. The couple worry about how she will function as she gets bigger, wonder if she’ll stop eating . . . and more. They doubt that she’ll ever be able to care for herself or live on her own.

For now, they’re taking life one day at a time.

“We just have to keep going,” Nicole Hrabanek said.

 

© 2015 The Norfolk Daily News . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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1 comment:

  • Old Cookie Posts: 3

    Brenna is a beautiful girl who we are proud to call our grandchild. She's always a treasure to be around and brings smiles and happiness to all who spend time with her. No one can begin to know how blessed Brenna is to have such loving parents to watch over her and help her through her difficulties 24 hours a day. We're so proud of Scott and Nicole.

     

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