Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

In honor of Rare Disease Day for NORD, celebrating their 30th Anniversary this year next month, I would like to get some awareness out about the rare disease that has turned our family upside down.
For my family and friends who often read this blog already knows LilyAnna Blu suffers from CDKL5. CDKL5 is a gene that you have and I have. We never knew it though, or cared right? Well you do know about it and care about it when it isn’t working correctly. One tiny gene in Lily’s otherwise perfect body has given her daily seizures. Daily.Like.Every.Day. EVERY. Ever been unfortunate enough to have or watch a child suffer a seizure from fever? Or from a fall? Heck ever have a dog who had a seizure? See one on youtube? It’s scary right? Every day. Each day since our girl was 3 weeks old (most likely even earlier) her body has seized. Then not only does she have this to deal with every day, she also has very limited use of her hands. Very limited. She has no words. None. Dr’s assume she is mentally retarded and every medical record has stated this is the case, but I look into her eyes and I don’t necessarily agree. If she is I couldn’t care one bit, but she has no words, her hands can’t even speak for her, how do any of us know what Lily is thinking? I think she is wiser than any of us. I think she grasps life well beyond any of us could ever grasp. I think she sits and she listens. I think she carries a sense of peace in her that we all desire we could have.
Lily is a ten year old girl whose life is in our hands each day. Every thing she needs we give her. We serve her and I will do it with joy until the day we no longer get the privilege. According to some doctors our days are limited, according to us her days are limitless. 
I want to offer one of these beautiful necklaces to someone who would love to wear it with pride. Someone who wears it and answers the question “what is CDKL5?” with a “something we need to cure! won’t you help us?”

All I am asking from you lovely friends is to help me raise awareness by liking IFCR on Facebook
and visiting and copying the address and pasting/posting it on your facebook page. Say I am posting this for Lily, or for Hannah, for Kiera, for Amber, for Mia, for Leah, Samantha, Vivi, Avery, Gage .. etc… I could go on for awhile with the names of kids who need us…just tell your friends this is something we need help in curing and I know we can with help from friends like you!
And of course after you do those two simple steps you must comment in the comment section below with the necklace you would like to have and your email! I will announce the winner Friday at 6pm (mountain time)
Thank you and good luck!!!!
PS If you don’t facebook, do it on Twitter, or Google +, or email it, or tell your friend in person, this is on your honor 🙂

22 thoughts on “***Give Away***

  1. Valerie L says:

    I love the second one (with the green disk).

  2. Deanna was diagnosed around thanksgiving this year… to find other families that go through what we go through has been cathartic. We had assumed deanna would be this way for life, but now we have family and friends that get it… thanks for the blog! Also love the second one with the green background…

  3. juliacdkl5 says:

    what a beautiful is my favorite color. Green symbolizes the master healer and the life force.

  4. Kathy DeSimone says:

    Waiting for a cure and to one day finally meet my daughter… the silver disks. Wonderful idea. X

  5. Anonymous says:

    Both are lovely, but I choose Cure CDKL5.

  6. Lisa Gleeson says:

    I love the second necklace, the one with the green disk. I am honored to display the website on my facebook page and would be honored to wear a necklace and spread the word.Lisa

  7. Anonymous says:

    My daughter was diagnosed ths year. Still waiting to see genetics next month. Love the silver disks.

  8. Lynda Ahrens says:

    Laura Lyn has taught us more above love than we ever could have imagined. In spite of all the CDKL5 “difficulties” she is a blessing to all who know her. Praying for answers, and treatments for our precious kiddos….and peace and strength for each family who is blessed with a special child……

  9. Kelly Barnes says:

    So beautiful Kim! What a wonderful to way to raise awareness! I already have my necklace so don't put me in the drawing. Just wanted to tell you I loved it! Hugs to Lily.

  10. Mary says:

    Love this idea! Posted and sorry I had never posted on my page before! Either necklace is beautiful to me!

  11. Anonymous says:

    fantastic idea…love it!!! thank you

  12. Anonymous says:

    I am posting for Ava and all the other kids and parents have to deal with it.

  13. says:

    Green disk

  14. Reagan Leigh says:

    Great idea! I love the first one! Reagan has so many characteristics of CDKL5! You know, green is also the mito color as well! Thinking of you and beautiful Lily often! (I can't believe she's 10!!!)

  15. Go Kim! Love all of our angels.

  16. Amy says:

    Love the green disc! And I love reading your blog. Re posting to all of my friends in hopes they will read and be touched by what they will read about cdkl5.

  17. Anonymous says:

    I love the first one and am proud supporter of IFCR and would be happy to post to my timeline. Love your blog Kim. xo Patti Waszkiewicz

  18. Kim says:

    denise hill — i am commenting for her since google is giving her troubles! thanks denise!

  19. Anonymous says:

    I love the first one with the silver discs…Great blog!!

  20. Anonymous says:

    Thanks for sharing Lily's story with us! Our daughter Erica is 14 years old and is a lot like Lily. I loved the day you wrote about Lily's haircut since I recently went through the exact same thing with Erica. Lily is so beautiful! She is in our prayers. We are all so blessed that God chose us to be the parents of these precious children! My favorite necklace is the first one and email is Thank you for the info!

  21. Cherie Dell says:

    Cherie DellI would love the first one, My baby girl was diagnosed 5th November 2012 she will be 1 on the 29th January. She is the most adorable little girl so happy go lucky love her to bits

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