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 CDKL5.com 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 🙂