Monday, August 07, 2006

Baylie Belewe

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* "". 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, "". 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!


Blogger FrogLegs said...

I just sent my order to you. Many prayers her way-- and sending this link to everyone I know.

2:57 PM  
Blogger Libragirl said...

Put me down for a bracelet. How do I get the money to you. Email me and let me know.

I am going to post this on my site. Hopefully, people will read it.

7:14 PM  
Blogger Pass The Torch said...

Baylie is in my prayers...

12:39 AM  
Blogger Chana said...

would you like me to post this in my blog too. would that help? and yes, prayers are on the way..pls let us know when you know...i'll go check out the website and see if their is a paypal account set up..or do you have one or how does the money transaction go?

sorry that anyone, you or her or anyone else suffers so much daily..

love you honey. thank you for being so kind as to help with her and the cause. you are a good person my sweet.

1:33 AM  
Blogger Shelli said...

This is really cool, Kimmy. I will check out the links and the video.

3:30 PM  
Blogger Shannon said...

Is there a way to buy these bracelets online? I'm in Seattle and now stores out here! Thanks for checking!

3:03 PM  
Blogger ...jus me said...

Kimmie, I did visit Bailey's website and signed the guest book. She is an awesome kid! Please let us know as soon as you hear something.

2:18 AM  
Blogger crse said...

What a cutie! I hope her recovery is complete and as painless as possible...

2:18 AM  
Blogger PixiePincessMom said...

What a beautiful, courageous & smart girl Bailey is! I know she had surgery a few weeks ago & I hope you will post soon how it went. Keeping you & her in my prayers.

2:34 PM  
Blogger Cat said...

Wonderful are doing such a good deed and it will come back to you. :)

12:37 PM  
Blogger Bek said...

This is great.....


4:35 PM  
Blogger sage said...

I couldn't get here from Michele's this afternoon. Glad I stopped by, now over to check out Bailey's site.

10:15 PM  
Blogger Lena said...

Emailing you RIGHT NOW. ;) Thanks for highlighting this little girl.

8:44 PM  
Anonymous MOM said...

God Bless Bailey!
More power to you!
Inspiring entry!

Guide to Parenthood

11:26 PM  
Anonymous Suade said...

Can I still donate? I noticed this post was done in 2006.

4:45 PM  
Blogger michaeledlavitch said...

Dear Math Enthusiast,
Hi. I am a Middle School Math teacher. I spent the summer making a website geared directly for grades 1-8. I want students to have a site where they can practice their math skills while still having fun. I have personally made most of the games.
If you have a place on your website to put a link, please do so. My site is located at:
Feel free to email me back with a link or a suggestion.
Thank you,
Michael Edlavitch

11:45 AM  
Anonymous John Clemson said...

Are you allowed to donate still?? I would freely donate if you could.

11:30 AM  
Anonymous Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

9:28 AM  
Anonymous Anonymous said...

Hi, as you can see this is my first post here.
Hope to receive some help from you if I will have any quesitons.
Thanks in advance and good luck! :)

3:54 AM  
Anonymous Anonymous said...


Just saying hello while I read through the posts

hopefully this is just what im looking for looks like i have a lot to read.

8:16 PM  
Blogger baylie26 said...

Hello! If anyone sees this well it's me Baylie Blewe Owen. You all wrote very sweet things. Right now I'm 11 years old. There is no cure, but without these diseases I wouldn't have met all the people I know and love. Best wishes!

11:19 PM  
Blogger baylie26 said...

Hi! It's Baylie Blewe Owen There is no cure yet, but a lot of love in my life.

Best wishes'
Baylie Blewe Owen

11:22 PM  
Anonymous ELLEN TROCHAN-KISH said...


10:46 PM  
Blogger Kimmy said...

Ellen, thank you so much for stopping by after all this time. How very sweet of you to spread the word by sharing Baylie's bracelets! And for praying for me. I'm worse now than before... that's why I don't post on my blog, but your encouraging words lifted my spirits today! May God bless you! love and kimmy hugs...

5:43 AM  

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