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Patients Raise Money For Their Own Research
Both Girls Suffer From Incurable Chronic Disease

Mary Ann Childers
Reporting
http://cbs2chicago.com/health/local_story_068161513.html


(CBS) CHICAGO Some remarkable young patients are now funding their own medical research.

CBS 2 Medical Editor Mary Ann Childers reports they both suffer from a chronic disease that
has no cure.

Its a relatively rare condition called
Chiari Malformation, in which the base of the brain bulges into the spinal column. This causes severe headaches, vision problems, difficulty swallowing and even paralysis if untreated. But two young patients are determined to beat it.

At age 6, Baylie Owen has already had four brain surgeries.

Fifteen-year-old Kara Ketchesin has had more than 11 operations.

"Like last year I missed over 100 days of school, but that was also caused by ... I had 2 brain surgeries then, Kara said.

Both are battling their illness by raising money for research. At first, Baylie sold drawings at a garage sale. She earned $27. But now, shes teamed with friends and family to make and sell bracelets a lot of bracelets. On Thursday, the first-grader presented her doctor at the
University of Chicago with a check for $70,000.

Baylie says she wants to help other kids avoid surgery.

"I like it when it says Bank of Baylie, she said. I wrote my name real big."

Karas putting her name on something, too. Its her signature on beautiful paintings.

"I've been painting since I was diagnosed, Kara said. I've raised thousands of dollars by donating them to support groups."

The stunning landscapes command big prices at charity auctions. Now, shes selling them on a Web site and remains optimistic, despite the pain of headaches every single day.

"I hope there's a time I don't have to have surgeries any more, Kara said.

If youd like to help Kara and Baylie, visit their Web sites.

( MMVI, CBS Broadcasting Inc. All Rights Reserved.)

Related Links

www.baylieforbrains.com/

www.karasart.com/


Six-year-old is helping others learn about Chiari Malformation in a creative way

Source: http://www.uchospitals.edu/news/2005/20050715-chiari.html

July 15, 2005

Baylie Owen is a generous entrepreneur. This 6-year-old from Houston is in the jewelry-making business to raise money for and bring awareness to a rare brain condition called Chiari malformation.

So far, she's raised more than $3,000 by selling her handmade beaded bracelets. Her profits go to the University of Chicago Pediatric Neurosurgery Research and Education Fund under the auspices of her doctor, David Frim, MD, PhD, chief of pediatric neurosurgery at the University of Chicago Comer Children's Hospital. 

Baylie was diagnosed with Chiari malformation, where the brain's cerebellum protrudes into the spinal canal, at 12 months old. The only treatment is surgery. Baylie had her first surgery at 13 months old. She's had three more surgeries since then.

There is no cure for this rare disease. Symptoms include headache, vomiting, double vision, difficulty swallowing, and hoarseness. The crowding of the brainstem and spinal cord can lead to serious consequences, including paralysis, if left untreated.

"Last year, she drew pictures and sold them. She made $27 and brought the money to Dr. Frim during one of her checkups," said Tressie Owen, Baylie's mom. "Baylie told Dr. Frim, 'I drew pictures and I sold them. That's to help my friends who have headaches.'" 

"I think it caught Dr. Frim off-guard. He got choked up because of what Baylie did, and then she said, 'Don't be sad. I'll get you more money.' Ever since then, she's been determined to make more money."

"I was just utterly delighted when Baylie gave me the $27," Frim said.

"Baylie is the greatest. She's sincere and just as lovely a girl as anyone could ever meet."

Baylie saw people sporting the yellow "Live Strong" Lance Armstrong bracelets to raise money for cancer and her mind started running. She and her mom went to a bead store and purchased blue beads and lettered beads to create messages. Baylie insisted on the color blue, because her middle name is Beluwe.

She created words with the lettered beads, such as "wish," because "she wished her friends didn't have headaches anymore," Owen said.

She spelled out the word "pray."

"Pray came from 'I hope that everybody prays for all my friends,' "Owen said. The family sells the bracelets for $3 each through Baylie's Web site, www.baylieforbrains.com.

The next time Baylie saw Frim she surprised him with $1,500 she raised by selling her bracelets. "I was just amazed," he said. "I wouldn't be surprised if she gives me a million dollars for my Chiari research the next time I see her."

It won't be quite a million dollars. But Baylie is on her way. The next time she sees Frim, she has another $1,000 to give him.

Baylie returns to Chicago for checkups once a year, depending on how she's feeling. After Baylie's first surgery, things went well until she turned 3, according to Owen. "Then the headaches returned. We'd meet with doctors who would ask us, 'How do you spell that?' They knew nothing about Chiari. It's frustrating to go from doctor to doctor and not know if someone can help your child."

Owen turned to an online Chiari support group to vent. That's when she heard about Frim and was encouraged to e-mail him. "He e-mailed me back that same day and told me to send Baylie's MRIs," she said. "After he looked at them, he said he could help and we made an appointment. That was two years ago and we've been seeing him ever since.

"Here we live in a big city (Houston) but we have to travel to a different state to get help," Owen said. "We hope by selling these bracelets, we'll raise more awareness about Chiari. It's important that people understand that we have kids that are in horrible pain from this. If we can help one family find an awesome doctor like Dr. Frim, then it's all worth it for us."

Baylie and her mom wrote a poem titled "Thank You." They try to include a copy with each bracelet sale.

Thank You

Thank you for your donation,
that will help fund research for
Chiari Malformation.

My hope is that every time you look at your wrist,
that you will put me and my friends on your prayer list.

We have something wrong with our brains,
and so we are always in pain.

So until our doctor finds a cure,
many surgeries we will have to endure.

 

The University of Chicago Medical Center

Office of Public Affairs

5841 S. Maryland Avenue, MC6063

Chicago, IL 60637

Phone (773) 702-6241 Fax (773) 702-3171


Girl's bracelets boost research into her ailment
July 15, 2005

BY LORI RACKL Health Reporter suntimes.com

Lance Armstrong isn't the only Texan selling bracelets for a good cause.

 

Six-year-old Baylie Owen has turned her Houston home into a jewelry-making factory, producing hundreds of bright, beaded bracelets to raise research money for a rare brain abnormality called Chiari malformation.

 

The curly haired kindergartner Thursday came to University of Chicago Comer Children's Hospital, where she has been getting treatment for the disorder for the last two years. This time, she had a $1,000 check in hand -- proceeds from the bracelets she sells on a Web site at $3 a pop.

 

"It's to help my friends get their heads better," explained Baylie, who has raised more than $3,000 for U. of C.'s research into Chiari, which causes the base of the brain to protrude below the skull and crowd into the spinal canal.

Some people are born with the condition but don't experience any symptoms. Others, like Baylie, live with crippling headaches, vomiting and other problems. Baylie already has undergone four surgeries to relieve pressure on her brain.

Buyers in Australia, Siberia

Baylie's quest to raise cash for research into her illness started last year, when she sold drawings for 10 cents apiece. She gave that $27 to her surgeon, Dr. David Frim, chief of pediatric neurosurgery at Uof C.

"He got choked up," recalled Baylie's mom, Tressie Owen. "Baylie told him, 'Don't be sad. I'll bring you more money.' "

True to her word, Baylie and her mom started stringing together bracelets made of blue beads, in honor of Baylie's middle name, Belewe. Some of the beads spell words, such as "hope," "wish," and "Chiari." They sell the jewelry on the Web site www.caringbridge .org/tx/baylieo.

"I never thought it would get this big," Owen said. "We've had orders from Australia and Siberia. As long as people want them, we'll keep making them."

Research dollars can be tough to come by for uncommon disorders like Chiari.

"A lot of money goes into cancer, trauma, Alzheimer's," Frim said, after Baylie gave him a high-five and handed him her latest payment. "But there are many diseases that don't affect a lot of people, yet can still be very problematic. This is one of them.

"Hopefully, we'll be able to figure it out," he said, "if Baylie keeps bringing us her checks."


'People in Chicago seem to have fallen in love with Baylie'

August 8, 2005

BY LORI RACKL Health Reporter suntimes.com

Chicagoans can't seem to get enough of the colorful, beaded bracelets being sold by an entrepreneurial 6-year-old Texas girl to raise research money for her rare brain abnormality.

After the Chicago Sun-Times last month featured Baylie Owen and her homemade bracelets on its front page, Baylie's mother said she received more than 4,000 e-mail orders -- including one from the organization overseeing Baylie's Web page, telling her to stop selling her beaded jewelry on the Internet site. "We do have a rule that prohibits fund-raising for personal gain," wrote CaringBridge spokesman John Wingate, in an e-mail response to the Sun-Times' inquiry as to why Baylie had to close up her cyberspace shop. CaringBridge is a nonprofit, online service that hosts more than 28,000 personal Web pages of mostly sick and injured children, so friends and family can keep tabs on their progress and stay in touch. Baylie has a Web page on the site, CaringBridge.org, where she'd been selling the bracelets since April. Baylie's mother, Tressie Owen of Houston, said she thought it was OK to offer the bracelets on the Internet site after seeing other CaringBridge members seeking donations for medical bills and expenses. "And we weren't doing it for private gain; we were doing it for research," Owen said.

Chicago company helps out

Baylie is selling her bracelets -- at a price recently boosted to $5 each -- to raise research money for Chiari malformation, a rare condition that causes the base of the brain to protrude below the skull and crowd into the spinal canal, resulting in crippling headaches and other problems. Baylie has been coming  to the University of Chicago Comer Children's Hospital for the past two years to get treatment. Her next appointment is in October, when she hopes to have a big, fat check for her doctor, thanks to booming bracelet sales. "I think she's close to $16,000 so far," Owen said. "The demand has been so crazy. Almost all the orders are from Illinois." Thanks to a Chicago-based Web hosting company, they can keep selling them. Hostway Corp. offered to post Baylie's Web site, baylieforbrains.com, free of charge, for as long as she needs it. "We read the article and we just wanted to help," said Hostway spokeswoman Jennifer Mussman. It's further proof, Owen said, that "people in Chicago seem to have fallen in love with Baylie."


6-year-old jewelry designer learns a lesson from Lance

05:44 PM CDT on Tuesday, August 9, 2005

By Mike Zientek / 11 News

Click to watch video

KHOU

Baylie Owen is too busy beading bracelets to feel sorry for herself.

Six-year-old Baylie Owen is dealing with a situation most adults would find overwhelming. She's been diagnosed with a rare brain disorder and has already had two brain surgeries.

 

But Baylie is a little girl with big ideas. She found a way to turn a negative into a positive by creating beaded bracelets to raise money for research.

 

"To help my friends that have headaches," she explains as she strings the beads together.

 

Bailey suffers from chiari malformation, meaning her brain grows into her spinal cord.

 

A doctor in Chicago treats her, but there's no cure.

 

The Lance Armstrong "Live Strong" bracelets gave Baylie an idea. Why not make and sell bracelets of her own to raise money to study her illness?

 

"This is my job," she explains.

 

"It's amazing. She's always been a kid willing to help other kids," said Tressie Owen, Baylie's mother.

 

Baylie's success made headlines in Chicago and that story fueled an explosion in orders.

 

"Why don't you put a couple of these on there?

 

"No."

 

"Okay, then you pick out some that you want to put on there."

 

At $5 a bracelet, Baylie has already raised about $16,000.

 

She gets a lot of help from her friends. They make bracelets and sell them at school.

 

"I felt really sorry. Baylie had this disease and she couldn't do stuff other kids could do," explained Lauren Coats, her friend. "Like she couldn't jump on a trampoline and stuff like that. So I wanted to help her cure her disease."


6-year-old girl is beading the odds

Aug. 13, 2005, 9:55AM

Jessica Kourkounis / For the Chronicle

Abbey Owen and Amy Paluch, both 8, from left, help Baylie Owen make bracelets, which can be bought for $5 on Baylie's Web site. Profits go to the Chiari research team at the University of Chicago Com

Facing a painful brain condition, Baylie Owen sells bracelets to raise funds for research By LESLIE CONTRERAS

Copyright 2005 Houston Chronicle

RESOURCES

Baylie for Brains Web site

Kindergarten was a tough year for Baylie Owen, and not just because of the usual adjustment to school.

"I think it became evident to her that she was different," said her mother, Tressie Owen. ''Kids don't understand."

Baylie, now 6, was born with a rare brain condition known as Chiari Malformation. Though some people never experience any symptoms, others, like Baylie, suffer from severe headaches, nausea and debilitating pain. Since her diagnosis at age 1, she's had four surgeries, three of them in the past year.

Although she's gotten better at telling her classmates why she can't play outside or go to gym class, she also found a way to look past her limits and find hope.

Over the past three months, Baylie has helped raise more than $15,000 for Chiari research.

Baylie began selling drawings she had made to raise money for a cure, at 10 cents each. Soon she and her mother enlisted the help of Jersey Village friends to make and sell beaded bracelets for $3 each. The price has since gone up to $5.

"She's always very aware that other people are suffering," Tressie Owen said. Since meeting other children who need multiple surgeries for Chiari, Baylie "felt like it was up to her to raise money to help all her friends (with Chiari)."

Last week, a group of 14 people, including five kids, gathered around hundreds of colored glass beads to help fill the 4,000-plus orders for Baylie's bracelets. The weekly "beading parties," held at the homes of friends and neighbors, have become a sign of community support for Baylie.

Pitching in

Selling the bracelets began through word-of-mouth, said Joan Coats, a neighbor who hosted last week's gathering.

"People started noticing the bracelets, and I'd tell them the whole story," Coats said.

She estimates she's made more than 200 bracelets. Her daughter, Kristina, 15, a 10th-grader at Jersey Village High School, took a photo of Baylie to help sell the bracelets at school.

Cindy Wineman, who began the beading parties and has known the Owen family for three years, learned how to bead bracelets when Tressie Owen asked for help. Wineman now averages about 120 bracelets daily with her family pitching in, she said.

"I think that's what good neighbors do," she said.

Wineman, like others who know Baylie, is impressed by the girl's ability to ignore the pain of her illness. "Baylie is incredibly strong. When most of us would be in bed, she pushes through, she perseveres."

Despite her unusual fundraising efforts, Baylie does not consider herself special.

"I'm not really, really brave," said Baylie. The girl with curly red hair, who will be attending first grade at Post Elementary, said she's raising money for a simple reason: "Because I want to help people's pain."

Baylie's story, detailed in a daily journal at www.baylieforbrains.com, has inspired people across the country and world to buy bracelets, donate money and beads, or send letters of encouragement.

'A grateful little girl'

The bracelets can be bought on the Web site, with profits going to the Chiari research team at the University of Chicago Comer Children's Hospital and the American Syringomyelia Alliance Project Inc., an organization that funds Chiari research and provides education about the condition.

"For diseases not so prevalent it's difficult to advocate at a national level," said Baylie's current neurosurgeon, Dr. David Frim, chief of pediatric neurosurgery at the University of Chicago hospital.

So when Baylie brought him $2,500 from the money she raised recently, he was moved.

"I thought it was extremely sweet of her. And I was really touched. Oftentimes a grateful family (will give money), but this was a grateful little girl."

"She has the world ahead of her," he said.

er Children's Hospital and the American Syringomyelia Alliance Project Inc.


Article from the 1960 Sun

Post Elementary student making bracelets for brains

08/24/2005

By Kentesheia Dockery, Staff Writer

A few years ago, when a young girl named Baylie Owen visited specialist David Frim, PhD, for an appointment in Chicago, she nearly made him cry. Prior to the trip, the Jersey Village resident had sold pieces of artwork in order to raise money for friends who are suffering from the same disease that she is.

Wiping his tears away, she handed him $27 and informed him there was more money where that came from. She didn't know how right she was. Since last May the Post Elementary first grader has raised more than $20,000 for the University of Chicago Pediatric Neurosurgery Research and Education Fund.

It all began after the trip to Chicago. Baylie was curious about the yellow bracelets that she'd seen so many people wearing. Her mother, Tressie, told her that they were honoring cyclist Lance Armstrong and also doctors who were finding a way to help people who had cancer. She told her mother that she wanted to make her own bracelets, too; but hers would be blue to mirror her middle name, Belewe. In the beginning, family, friends and doctors bought the bracelets for $3 in honor of finding a cure, but additionally to provide something fun for Baylie to do, taking her mind off of other things. Baylie was 1 year old when she was diagnosed with Chiari Malformation, an illness affecting the brain and spinal cord subjecting patients to headaches, dizziness, blurred vision, hearing loss and other distracting effects. Even in the classroom bright lights and noise make it difficult for Baylie to concentrate, and until recently, it took several hours for her to fall asleep at night.

"People have been so amazing throughout all of this," Tressie said. "I got a tip from an adult who's living with the disease to turn the TV to a blank channel before she goes to sleep. They said the reason why she can't go to sleep at night is because she's not distracted. The white noise gives her something to do. I'm willing to hear anybody's suggestions because I'm desperate and I want to help my child. If there are alternatives out there, I want to know about them."

Dr. Frim, Chief of Pediatric Neurosurgery at the University of Chicago Comer Children's Hospital, has been credited with the way their lives have changed over the years. In the beginning it was hard to understand what was going on and even harder to explain, but for her daughter to be excited about their Chicago visits is the greatest feeling.

"We are really happy with him and we believe that everything happens for a reason," Tressie said. "Finding a doctor as knowledgeable as him that can answer our questions is a huge hurdle to get over. This all started because Baylie wanted to help her friends who have headaches. She suffers from debilitating headaches everyday but yet wants to help her friends with their pain."

Within the past month the Owens have found it difficult to keep up with thousands of orders spanning nationwide, and have even enlisted the help of the National Honor Society at Jersey Village High School. For more information about Baylie's bracelets, or for more information about Chiari Malformation, visit www.BaylieForBrains.com.


    Article from chicagoparent.com

Can-do kids: Baylie Owen

by Beverly Mendoza


Baylie Owen is the busiest 7-year-old we've ever met. At an age when we were busy playing hopscotch, Baylie is already famous.

You may have read about her in People magazine or seen her being interviewed on television. But it wasn't an easy road.

By the time she was 6, she had undergone four surgeries for two rare brain conditions-chiari malformation and pseudotumor cerebri. The former results when the back of the skull is too small, reducing pathways for spinal fluid and forcing the tonsils to protrude through the bottom of the skull.

It causes severe head and neck pain, vertigo, muscle weakness, vision problems, even paralysis. Pseudotumor cerebri literally means "false brain tumor" and has similar symptoms.

Baylie could have spent all her time complaining. But instead, she got to work. To help fund research, Baylie started making colorful bracelets and selling them for $5. Her signature color? Blue. Her middle name is Belewe, since she was born on a blue moon.

We caught up with Baylie and her mom, Tressie Owen, at the Duchossois Center for Advanced Medicine at the University of Chicago. She was visiting her surgeon, Dr. David M. Frim, for a checkup and to give him a check. To date, Baylie has donated $98,027. On Aug. 3, she presents another $12,000.

Order Baylie's bracelets at www.baylieforbrains.com or buy them at Once Upon a Child stores. Catch Baylie on MSNBC's "Dayside" at 8:30 a.m. Aug. 9.

 

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