Saturday, May 16, 2015

Art of Awareness Blog Hop Reveal Day!

 

art of awareness header

 

I am so excited to share my pieces and story with you all! Lori Anderson teamed up with Heather from Swoondimples to create this blog hop and I am so excited about it. Let’s get right to it, shall we?

I chose 2 beads, since I wasn’t sure if Heather would be able to make the bean beads in multiple colors. Which means I got to make twice the pieces. I chose the colors purple and green, which on their own stand for many, many disorders, diseases, cancers, illnesses, etc. But put them together? And you get the two colors for a disorder called Schizencephaly.

schiz ribbon

 

Most people don’t know what Schizencephaly is—I didn’t until late August of 2011. And that’s because it is an extremely rare congenital brain malformation which effects an estimated 1 in 100,000 people. Which means that currently there are only about 7,000 people living with Schizencephaly in the entire world. Research is still being done as to its cause, but most doctors believe that it has a couple of causes—one being genetic, and one being that the baby suffered a stroke of some sort in the early stages of pregnancy. Schizencephaly causes there to be slits (or clefts) in either one or both hemispheres of the brain. This causes a host of other symptoms, including epilepsy (most people having multiple seizures a day), poor muscle tone, speech delays, cerebral palsy, and much, much more.

In late August of 2011 my parents (who are foster/adoptive parents) received a call from a case worker for a new placement—a newborn little girl. As usual, my parents said yes, no questions asked. They soon found out that Miss A had been diagnosed at birth with Bilateral Schizencephaly. Of course we hit the internet to find out all about it, and were hit with road blocks because there isn’t much out there. We were able to find out that the bilateral part meant that she had these clefts on both hemispheres of her brain. My parents were told of all the possible problems Miss A could face in her lifetime, and my family took off on our journey with Schizencephaly. We’re currently working on a website to share her story, but there isn’t much there. But feel free to check it out, as there will be more this weekend since May 19th (Tuesday) is Schizencephaly Awareness Day. You can check it out here: AIM for Schizencephaly Awareness.

Anyway, back to the jewelry! Purple is the color of Epilepsy awareness, and green stands for Cerebral Palsy awareness. Since these are the two main characteristics of Schizencephaly, a group of parents of Schiz Kids decided to put them together. Here are my pieces:

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My first piece is a bracelet featuring my purple bean bead that says “aim”. I chose the word aim for a few reasons-the main one being that they are Miss A’s initials. (cool, huh?) The second is so that I can remind myself to always aim for awareness, our goal, any goal, just as Miss A does. She never gives up even though many things are extremely difficult for her. The bean bead features that cool awareness ribbon stamp on the back, and the bracelet is just simply strung with some small silver ball spaces, and purple and green dyed jade rondelles.

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My next piece I haven’t decided if I’m going to put in on a chain, key ring, or use it around the house a decoration, so I left it like this until I decide. It features a green bean bead this time, with the word “joyful”, as a reminder of how full of joy Miss A always is. She never lets anything get her down, and is something I’ve learned that I need to work on myself. She is always so full of giggles, smiles, laughs, and happiness. I surrounded it with 2 vintage Swarovski crystals and topped with a gorgeous amethyst rondelle.

 

Lastly, I made a pair of simple earrings.

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These are just simple dangles of dyed green jade teardrops and gorgeous dark purple amethyst rondelles on sterling silver ear wires. These earrings can be yours for the low price of a comment on this post, and the help of a random number generator on Tuesday.Winner will be announced between 11:00 PM and Midnight Tuesday night, May 19th.

Thanks for stopping by to learn about Schizencephaly, and my favorite little girl, Miss A. To see the list of participants in this hop, please check out the page over at Pretty Things Blog.

26 comments:

  1. Miss A sounds like a wonderful little girl and I hope a cure is found though it sounds like she has a rich life already.

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  2. Thank you for sharing about Schizencephaly. I had not heard of it before, so you are spreading awareness. Your family and Miss A are lucky to have found each other. You made lovely things with the beautiful awareness color combination.

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  3. It sounds like your family has taken a very special girl into your hearts. You've made some beautiful pieces to celebrate her life!

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  4. How wonderful that your parents welcomed Miss A. It sounds like she will face many challenges in her life. Thanks for sharing your story! We definitely need more research into brain disorders.

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  5. Beautiful! Thank you for sharing your story - what a lovely celebration of Miss A!

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  6. You have a very special family! Hopefully spreading awareness of this disorder will help them and others who are dealing with this.

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  7. Thank you for sharing your story. How old is Miss A now? I bet she is a joy. Beautiful contributions.

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  8. Your pieces are lovely and so is your family. Foster parents are very special people. Thank you for sharing your story.

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  9. Beautiful story, thank you for sharing it! Lovely pieces too!

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  10. What a beautiful story and thank you so much for creating awareness for this disease.
    Very pretty pieces.

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  11. What a lovely story about how your parents (and you) are helping little Miss A. The bracelet is very sweet and the charm you've started with your other bean is pretty.

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  12. Your family truly gives life to the uplifting words 'love more. give more'
    What a blessing to read your story!

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  13. What a wonderful, loving story to share. Miss A. sounds like a true gem. How wonderful your family has provided with her with such a loving, supportive home. I have no doubt she'll go far with that sort of love in her life.

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  14. Kudos to your family for their willingness to help out Miss A. Your pieces are beautiful.

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  15. What a wonderful family you have! And thank you so much for sharing Miss A's story, I have never heard of Schizencephaly, but am so glad to be a little more aware. Miss A sounds like she's going to grow up well loved and well taken care of, and that she will keep bringing her joy to all of you <3. Your pieces are absolutely lovely! Best wishes!

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  16. What a wonderful family you have! And thank you so much for sharing Miss A's story, I have never heard of Schizencephaly, but am so glad to be a little more aware. Miss A sounds like she's going to grow up well loved and well taken care of, and that she will keep bringing her joy to all of you <3. Your pieces are absolutely lovely! Best wishes!

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  17. Fostering a child in need brings great joy and sometimes great hardship. I hope your family's journey is as satisfyingly happy as Miss A sounds

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  18. Thank you for sharing your story and your lovely designs.

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  19. Thank you for sharing your story and your lovely designs.

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  20. Thank you for informing us about such a rare condition. Good wishes to Miss A and your family. You made very lovely pieces with each bean.

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  21. great story and greay projects! congrats!

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  22. Thank you for sharing the wonderful story about your parents and Miss A. Also, thank you for telling us about this rare condition. I love what you did with both beads and the meaning behind them.

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  23. I am one of probably many that is unaware of Schizencephaly! You and your family are truly marvellous people for all that you do for Miss A. Thank you for enlightening me and sharing your story. Very lovely designs for your cause!

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  24. Really nice uses of the beads, and such an important cause you're bringing to light, too. Thank you :)

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  25. Awesome story. It still amazes me how many diseases and illness out there that there is so little known about. Good luck with the continued research. And beautiful pieces with the green and purple....they really go together well.

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  26. These are awesome, and I love your next post, with the lollipops. I'm constantly amazed at how many diseases are out there that have no protocol for help.

    Thank you so much for doing this and educating us!

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