Patients Raise Money For Their Own Research
Both Girls Suffer From
Incurable Chronic Disease
(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.
It’s 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, she’s 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."
Kara’s putting her name
on something, too. It’s 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, she’s 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 you’d like to help
Kara and Baylie, visit their Web sites.
(© MMVI, CBS
Broadcasting Inc. All Rights Reserved.)
Related Links
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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