I learned about Baylie completely by accident a few months ago... before my last operation. I don't know why it has taken me so long to post about her, but I truly believe in God's timing!
You know my story. You've heard the diagnoses, the symptoms and the surgeries. You know about the increase in pain and symptoms and the "end of the road" for me in terms of a cure or even a way to help ease it all. (Some background if you don't know about my diagnoses, symptoms, old surgeries, recent surgery or current yucky situation.)
Baylie is a six year old little girl diagnosed with two of the rare brain diseases I have... Arnold Chiari Malformation and Pseudotumor Cerebri. She has an LP shunt and has had two brain operations so far for her Chiari.
Today (8.7.06) Baylie is having another operation. The doctor is going to replace her LP shunt. Please pray for Baylie and her family as they endure yet another bump in the road to recovery. Please pray that Baylie will grow to live a life free from pain and the horrible symptoms that go along with these terrible diseases.
Baylie has already done such wonderful things with her young life. Baylie decided to make and sell beaded bracelets. Then she donates the money she makes to research. Research for Pseudotumor Cerebri and Arnold Chiari Malformation. Both diseases are known as "orphan diseases" meaning no-one knows how they start and not many want to put the money (or effort) into researching it. To date Baylie has collected over $98,027.00 from her bracelet sales/donations and has given the money to Dr. Frim of the University of Chicago.
Let's help Baylie give much more. I'm taking orders for her bracelets and her t-shirts... *front* "I've really had brain surgery. What's your excuse?" *back* "www.baylieforbrains.com". Bracelets are made with either glass or plastic beads. Some are made with both. Each bracelet contains at least one blue bead as her middle name is Belewe.
Bracelets are a donation of at least $5 each. The t-shirts are $11 for kids (sizes S and M) and $14 for adults (sizes S, M, L, XL). The front of the t-shirt says, "I've really had brain surgery. What's your excuse?" and the back says, "www.baylieforbrains.com". You can also purchase car ribbons. View them here.
I'm already collecting orders from some friends and family. I'm trying to do my part by giving Baylie money for her bracelets... not the shipping. So when the orders are received I will mail them to you to save her the shipping cost. Please remember Baylie is having surgery today so orders will most likely be postponed for a short time period.
I know for some time you guys have asked/wished for something to do to help me. I would love for you guys to help out in this way. Thank you, thank You, THANK YOU!!!!
This video shows Baylie painting and making her bracelets, and her mom describing Baylie's journey. (Scroll down to "Hoosier Hero- Baylie Owen.) And you can watch this video about Baylie and her friend, Kara, who suffers from both diseases as well. You can visit Kara and her art work... also featured in the video.
Place your order online or contact Baylie's mom or e-mail me with your orders .
You can also purchase special Baylie candles and soaps.
(Visit Baylie's website and leave her a message in her guestbook!
Read more about Baylie here and here.)
UPDATE: (9.18.06) Baylie remains in the hospital after this initial operation. She suffered from low pressure headaches (which are far worse than high pressure... excruciating!!!). She's had to lie flat on her back without getting up for weeks. She has gone through two or three blood patches already. So far no luck.
Not only does Baylie continue to need your prayers, but her sister does, too. Her younger sister is undergoing tests to determine the cause of her pain. Thank God Arnold Chiari has already been ruled out! Please pray for and support Baylie and her family and her many friends... young and old.
UPDATE: Baylie has been out of the hospital for more than a month. She's going to school, playing with her sisters and friends, and attends fund raisers as much as she can. She's not completely pain free, but her pain is waaaaayyyy better. She still needs and asks for your prayers for not only herself, but for her friends with PTC and AC.
Thank you for those of you that continue to ask about Baylie and request bracelets. It means so much to me!!!! God bless!