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Mom of girl with rare disorder: ‘My fear is her leaving me’

Shelby Brown 7 is kissed by her mother LatashMims their home 5000 block W. Erie St. Tuesday August 28 2012

Shelby Brown, 7, is kissed by her mother, Latasha Mims, at their home on the 5000 block of W. Erie St. Tuesday, August 28, 2012, in Chicago. Shelby has a rare genetic disorder called Cockayne Syndrome. | John J. Kim~Sun-Times

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Shelby Brown’s Cockayne
Syndrome Awareness Benefit

♦ Friday, Nov. 2 at 7 p.m.

♦ Allegra Banquets, 4200 N. River Rd., Schiller Park

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Updated: November 23, 2012 6:01AM

Shelby Brown turns 8 Oct. 22, but her birthdays are a mixed blessing for her mom, Latasha Mims.

“I’m kind of happy and sad all at the same time,” Mims said. “My fear is her leaving me.”

Shelby has a rare genetic disorder called Cockayne syndrome, which causes premature aging and a failure to grow at a typical rate. Because of the disease, Shelby can’t speak, is legally blind and deaf and needs a walker to walk.

Children with the disease typically live until their 20s or 30s, but Shelby’s life expectancy is closer to 7 to 10 years, her doctor says.

Cockayne syndrome occurs in about two out of every 1 million newborns in the United States and Europe, according to the National Institutes of Health. In Illinois, Shelby is thought to be the only child who has it, Lurie Children’s Memorial Hospital of Chicago says.

A typical day involves getting Shelby up at 6 a.m. and giving her breakfast. But Shelby’s stomach can’t hold much these days because her stomach has shrunk — one of the many afflictions that Cockayne syndrome can cause. So Shelby may only eat three French fries and half of a chicken nugget for the entire day. She gets most of her vitamins and minerals from her feeding tube, which is inserted in her stomach from 6 p.m. to 6 a.m.

Mims admits caring for Shelby can be tough because Shelby can’t talk.

When Shelby has “a certain look to her in the eyes,” Mims knows she needs to go to emergency room to determine what’s wrong.

“I’ve lost count of how many times I’ve been to the ER,” Mims said.

They rely on a secret language. When Shelby’s hands cramp, she holds them up in the air, so Mims can massage them. And when Shelby is trying to get Mims’ attention, she’ll pinch her hard.

“Others may think she’s fighting, but she isn’t,” Mims said. “I know it’s something she wants or is trying to tell me.”

Once or twice a week, Mims takes Shelby to one of her doctors — an ophthalmologist for her cataract, an ear doctor for her ear implant, a dentist for the adult teeth that came in when Shelby was just 7.

Shelby also goes for physical therapy once a week, because her muscles are so stiff.

Because Cockayne syndrome is so rare, it took about six years to determine that’s what Shelby had.

Mims said she first grew concerned that something was wrong with Shelby when she was 4 months old. Compared with other children the same age, Shelby was slow to do things like roll over and sit up, and she was very quiet and always stared.

But when Mims took her to get genetic tests and other tests, nothing shed light on what her illness was.

At age 2, Shelby was diagnosed with cerebral palsy, because that matched with some of her symptoms. Mims, however, wasn’t convinced.

So her pediatrician, Dr. Karen Judy, then at Loyola University Medical Center, kept working to get an answer that felt right. By 2011, though, Mims was tired of all the doctors and about to give up when she saw her own dermatologist at Rush University Medical Center.

“Immediately when I walked into the room, she said what has Shelby been diagnosed with,” Mims said. “I had said cerebral palsy. And she said no, have them test her for something called Cockayne syndrome.”

In order for a child to be affected, both parents must pass on a mutation in the same gene.

There is currently no cure for Cockayne syndrome. But some of the symptoms, such as sensitivity to sunlight and neurological issues, can be helped by intervention, said Dr. Amy Paller, Shelby’s doctor at Lurie Children’s Hospital who specializes in genetic disorders involving skin.

Despite all this, Shelby is a happy “girly girl” who loves to wear pink, enjoys being in church and looks forward to going to learning school during the week, relatives said.

And Mims said she feels that Shelby gave purpose to her life.

“I feel that God gave her to me just as she should be,” Mims said. “And he trusted me to take care of her.”

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