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Rare disorder puts Southland families on a mission

Jennifer Brown left sits with daughter Lily Shelby Swann her daughter Kendall Swann home Frankfort Illinois Monday May 13 2013.

Jennifer Brown, left, sits with daughter Lily and Shelby Swann and her daughter Kendall at the Swann home in Frankfort, Illinois on Monday, May 13, 2013. | Matt Marton~Sun-Times Media

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If you go ...

What: Strollathon

When: May 18. 8:30 a.m. registration, 10:15 a.m. stroll, 11:15 a.m. post stroll activities, including raffles, auctions, bean bags, petting zoo and Princess Merida.

Where: Union Creek Park, 19900 S. 80th Avenue, Tinley Park.

Why: Raise money for the International Rett Syndrome Foundation.

Information: www.strollathon.org/chicagoland.

Anyone wishing to participate may register on site or visit www.strollathon.org/chicagoland.

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Updated: June 17, 2013 6:32AM



“There is nothing like a mom or dad on a mission.”

That’s Shelby Swann’s simple explanation for all she does for her 8-year-old daughter Kendall, the International Rett Syndrome Foundation and other parents whose children also are afflicted with this genetic neurological disorder.

The IRSF Strollathon — which Swann, a Frankfort mother of three, has chaired for the past two years — is one of the nonprofit’s largest fundraisers. This year’s event will be Friday at Union Creek Community Park, 19900 S. 80th Ave., Frankfort Square.

With her every step of the way is Jennifer Brown, of Oak Forest, mother of 4-year-old Lily, who, like Kendall, has Rett Syndrome.

Last year’s event drew 500 participants. This year, they expect 700, including 32 girls with Rett Syndrome, ranging in age from 18 months to 30 years old.

The disorder occurs almost exclusively in females. Symptoms begin to show between 6 and 18 months, when the girls begin to regress. They may lose their ability to talk or walk. They may have seizures and develop scoliosis and hold their breath. Most noticeable is constant hand motion, such as wringing their hands. Symptoms can be similar to cerebral palsy and autism and the disorder often is misdiagnosed. An accurate diagnosis can take one to two years, the two moms said.

Kendall lost interest in her toys and began withdrawing. Lily regressed and began pulling her hair out.

“It’s a very scary, very sad time,” said Lily’s father, John Brown. “We were freaking out when she was regressing. Many times there is nothing you can do and that is the hardest part. It was a blessing to get a diagnosis. We know what it is.”

They also know there is no cure or treatment for Rett Syndrome, and that these girls can live well into adulthood. But they do have a lot of hope that research will prevail, and Swann and Brown do what they can to fuel that hope.

These young girls may remain very healthy, very smart, fun and affectionate, Swann said.

She also is the IRSF Illinois regional representative who reaches out to families with newly diagnosed victims of the disorder. She and Brown met when Lily was diagnosed two years ago.

“You have to understand what families are going through. They are hysterical people who think life is over,” Swann said.

She admits there are “awful” things about this disorder. She begins every morning by checking to make sure Kendall is still breathing.

Some girls have died in their sleep, but these moms try not to dwell on that, preferring to focus on what can be done.

The biggest challenge is “getting the family to realize there is hope,” she said. “Yes, she has an awful disease, but these kids are fun, they’re smart. We have to adjust to different techniques, but we try to live a typical life.”

The physical challenges are the worst, John Brown said.

“They are perfectly healthy but their brain cannot tell them how to do it,” he said.

“They can’t do things we take for granted, like breathing, chewing and swallowing. They have to think about it,” Swann said. Many girls require special equipment, wheelchairs, leg braces, beds and bathtubs or special therapies.

Parents have to be “creative,” she said. Most important, they learn creative ways of communicating with their children.

Rett Syndrome girls frequently communicate with their eyes.

“The eyes have it,” Jennifer Brown said.

One bit of assistive technology that has enhanced their lives is a computerized eye gazing board — My Tobii — a device that speaks for them when they fix their gaze on it.

Lily can tell you all the colors she has learned. Kendall can tell you if she is hungry or not feeling well. Her computer can be mounted on a table or on her wheelchair and is programmed with information about her, Swann said.

“She will look at a page and perhaps introduce herself to you by saying, ‘Hi, My name is Kendall. I am 8 years old. I like to eat french fries.’ The computer speaks for her,” Swann said.

It can also offer relief for distress, discomfort or boredom, her mother said.

When families come together at the Strollathon, they share what has worked for them.

Despite the daily challenges they face, they are committed to raising money for research, Swann said. They learn from each other and support each other while having fun and supporting their cause.

Research has shown that symptoms have been reversed in mice. There also are clinical trials on various treatments and studies on breathing regulation, Jennifer Brown said.

“Rett Syndrome is the Rosetta Stone” of brain disorders — research may help discover cures or treatments for other disorders, such as Parkinson’s and Alzheimer’s, she said.

The IRSF also hosts an annual family conference where families can learn more and connect with other parents, doctors and therapists.

“The key for families like us is being able to talk to others about it and spread the word,” Swann said. “At my first stroll, a little girl looked right into my eyes and pulled me in. I love these girls. They are so fun.”

“You feel such love the day of the stroll,” Jennifer Brown said. “No one cares if your child is screaming.”

“The event is for these girls who can come and be themselves and be accepted 110 percent. It is their day,” Swann said.



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