Six-year-old is helping others learn about Chiari in a creative way
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,
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 for your donation,
that will help fund research for
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.
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