Thursday, January 04, 2007

Baylie for Brains


My heart is full of a little girl I've never met. A little girl that touched my heart in such a way I seem to be living and fighting for her. And in turn I'm fighting for myself.

Baylie is a little girl I "ran into" while surfing the web. I learned that she not only has two of the rare brain diseases I have, but she's only 7 years old.

Baylie decided that she wouldn't stand for brain tumor like symptoms, the constant and terrible headaches (and neck and back pain... pain all over at times) or any other yucky symptom that reared its ugly little head. She instead decided to raise money for research. Research that is to date NONEXISTENT. (And I've been diagnosed for over 17 years!!!)

She started coloring pictures and sold them at garage sales. Then quickly turned to making bracelets. Little beaded bracelets that have earned $100,000 toward research for Pseudotumor Cerebri and Arnold Chiari Malformation.

Baylie has touched my heart so. Though I know my diseases are too far along for a cure... Baylie's aren't. She can live a normal and pain-free life if a cure is found. And so can many others because of her efforts.

My tiny little post about Baylie is nothing wonderful. It was written in a rush and a flood of emotions. It jumps around and is far from well written, but it's from the heart. My post's about a little girl with so much hope, a little girl with big arms who embraces so many... a little girl who deserves to know peace.

(For updates and ordering info click here!)

16 Comments:

Blogger Amy said...

Good list! A bus for the first time! Can't imagine what I'll feel when that day comes!

3:20 PM  
Blogger AnIowaMom said...

I'm all over this ... thanks for sharing info on Baylie ... what a strong minded and brave little girl ... I don't even know her ... and already she's touched my heart! Thanks for sharing her story! :)

5:48 PM  
Anonymous carlo24 said...

She'll pull through with the help of God. Just believe in miracles for they are bound to happen, perhaps not in the way we imagine it to be but in another form. Just stay strong an believe that there are people out here who care and pray for you and Baylie. God Bless!

10:02 PM  
Blogger FRIDAY'S CHILD said...

Baylie is surely a strong little girl. If only I lived near, bracelets would not be a problem. I can buy loads of them. But I'm so much oceans away. Instead I'll send her prayers which can reach anyone as far as the moon and the stars.
Thanks for dropping by.

10:53 PM  
Blogger monica said...

I lvoe your heart girl.

5:31 PM  
Blogger Lindsay said...

I am in tears.. Sometimes it take a story like this to make you realize the true gifts God give you in life.. Ijust ordered 3 bracelets, one from each person in my family. Though I am the only girl I get to wear them all :)
THANKS for sharing.. I am going to add her picture and link to my sidebar!
You have a HUGE heart! God Bless YOU!

12:30 AM  
Blogger Chaotic Mom said...

Crap. I'm going to have to read more because these are things they've thought about with my oldest son. Crap. We're hoping it's just his malformed cochleas causing problems, but are checking out some other things, too. I REALLY need to read more of your posts. THANK YOU very much for sharing them, too. Thank you for your honesty.

11:25 AM  
Anonymous Kathy said...

Jeeze, I only came over to say "hello" and to leave and "thank you" for stopping by PPP of View, Take Two. I was here close to an hour fully absorbed. I learned so much.
Thanks for sharing.

4:09 PM  
Blogger DutchBitch said...

Hi! visiting your blog on my way through Click & Comment Monday! Never been here, but I like it very much!

12:38 PM  
Blogger *~Tey~* said...

my prayers are with you and this girls family.

2:39 AM  
Blogger Lynn said...

My prayers are out there for all three of you.
I too have a brain injury that causes constant pain.
I know what it is like to have 5 to 8 level pain every day with no breaks.
I was a constant year before a pain specialist tried a fairly new pain relief. I have anesthetic injected into the nerve foramin of my head to freeze the nerves that go to the dorsal horn. Then she injects anesthetic into the facet joints of my neck. Then down my back, and into the trapezious muscles to stop secondary spasms. I am frozen from the waist up for one day. One whole day every two weeks - pain free. It sounds like nothing, but what it does is gives my body a chance to rest well, and allows the daily meds to work better. So I may get three days on regular meds with pain 0-2 level, plus the "brain freeze" day with no pain. It isn't perfect, but it gives me an emotional edge. Inside me I feel stronger and more positive.

1:57 AM  
Blogger monica said...

Hey, I miss you. I hope you are doing good. I was just thinking about you!

Take care,
karen

9:50 PM  
Blogger stacey said...

Kimmy, I'd love to order a bracelet. Please email me or post a comment on my blog to let me know how I can order one and how much money to send.
Hope you are doing well!
Stacey

4:32 PM  
Blogger Smurf said...

Thank you for bringing out attention to this. It is a heart warming story!

6:03 PM  
Blogger DariDonovan said...

Happy New Year, just came by to see whats new and wish you all the best for 2007. I have moved my personal blog, come visit sometime.

Dariana

2:57 PM  
Blogger It's a FLIP-FLOP World said...

I saw you had posted and was so glad to see you back again. I just want to wish you a very happy 2007...I am so praying that it will be a good one for you...My Monday Memory is up if you feel like going and reading it..

Sandy

3:02 PM  

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