Friday, December 14, 2012

Kayli's Krusade to Kut the worthless label

Kayli's Krusade to Kut the worthless label

Kayli, has a diagnosis that denied us the opportunity to save her umbilical cord blood at birth. We were told that if she died (she had a less than 10% chance of surviving, with her Trisomy 18 diagnosis) we would not be allowed to donate any of her organs because every cell of her body was affected with Trisomy 18. 

We were told she i
s "incompatible with life", not worthy of life, nor of giving life to anyone else. We weren't even allowed to save her umbilical cord blood to help her own, biological brother, who was battling brain stem cancer at the time.

Kayli is now 3 years old, and has the most perfect hair to donate to another child in need! We want to shout it to the world! Our daughter IS worthy of life, and she is continuing to share her loving, giving, qualitative life with others! If we had lost hope, we would have dreaded her impending demise, instead of celebrating and sharing the joy of her life with others! If we believed Kayli's life was worthless (as it was labeled), she would not have her hair to donate to another warrior child! Our family wants to share Hope with other families facing a Trisomy diagnosis.

Kayli Kut the label today!!!! Not only is she worthy of life as our daughter, sister, friend, and person...but now she is also a HERO!!!! Kayli donated her LONG hair to Wigs for Kids today, to help another warrior child in need!!! 

Kayli is an inspiration for many!  I hope others see her as the hero and warrior she is, not as a Trisomy 18 diagnosis and unworthy of life!  No matter the challenges in our own life, we are ALL WORTHY to someone!  

 We would like to shout out a VIVACIOUS Thank You, to Wigs for Kids, who was present for Kayli's Krusade.  Leslie, the Associate Executive Director, flew in from OH to 
personally except Kayli's 4 ponytails!!! Kayli and family were even able to skype with the founder of Wigs for Kids, Jeffrey!!! We would also like to shout out a loving Thank You, to everyone at Blush Salon and Spa in Crystal Lake!! They were all such amazing hosts!  Blush Salon and Spa is now generously offering a free hair cut if you donate your hair in honor of Kayli's Krusade, to Wigs for Kids!!!!  Thank You, Christina!!!! Gina did a wonderful job of comforting me while cutting Kayli's hair (yep, this Momma cried during Kayli's first hair cut!). lol  Kayli was peaceful and appeared to enjoy the weight lifted off her shoulders as her hair was cut! :D We were able to take a lock of Kayli's hair home, to add her first hair cut to her many memorable moments! <3 

Kayli's friend with Trisomy 18, Carlie (6) was also in attendance!  It is always wonderful to see Carlie and her Mom, Christy!  When in a world where Trisomy is so gloom, at times you can feel alone, lost, hopeless, and frustrated.  Having other families around you who understand the Trisomy journey, no matter if their loved one is alive or has passed on, can bring a wealth of comfort and bring peace and acceptance.  If you, or someone you know is facing or has faced a Trisomy diagnosis (2, 9, 13, 18, 21, etc) please let them know they are NOT alone!  You can suggest they contact me,, join Trisomy Families on facebook @   or visit our website,  The website is currently under construction, but should be up shortly! 

Please consider donating for Kayli's Krusade!!! While joining Kayli's Krusade, you will be spreading Trisomy Awareness, helping give a warrior child a wig, and supporting an amazing Kause! ;-)

To donate at your Local Wigs for Kids affiliate in honor of Kayli's Krusade, please go to
If you do not have an affiliate salon near you, please follow the online directions to send the hair donation to Wigs for Kids @ 

What an amazing day, for an amazing girl! <3  


  1. You and Kayli are my HEROES!!

    My own daughter, Olivia Brienne Conover, died in 2001 of full Trisomy 18. We heard the same phrases from the doctors that you did: her condition was "...incompatible with life..." we "...could not donate her organs..." and were told that while her twin brother was at no risk, we should expect her to be stillborn or to die within hours of her birth. She lived for 15 days. I had to fight like a tiger to get the hospital to release her to my care, at just over 2.5 lbs, with congentival ASD, VSD, patent ductus defect, failure to thrive, the common index finger crossed over to the pinky, gravage feedings.

    I applaud your amazing strength to prove to the doctors that they are WRONG! Every life has value -- EVERY LIFE! Doctors do not know everything, most of them are certainly out of touch with the love between a mother and a child. My daughter's life had value: she was too beautiful a soul to remain here very long, God had other plans for her. It is my job to outreach to other mother's who experience either the loss of a child or have a T-18 child to let them know that they are not alone.

    I should be lucky enough with my nearly 45 years on this planet to touch as many lives as my precious daughter did in 15. God bless you and Kayli!

    1. Thank you for sharing Olivia's journey with me, Kaylyn! I agree with your statement about lives Olivia has touched! <3 God Bless You too! <3