NKH Awareness Day - Wear, Share, Give, Love

This Saturday, May 2nd is NKH Awareness Day across the globe.  This day has been created by NKH warrior-parents, fighting to draw awareness to the disease that affects their children, and in many cases, takes their lives at a very early age.  Mike and I, along with the rest of our NKH Family around the world, invite you to take part as we Wear, Share, Give, and Love to raise awareness. 

What does "raise awareness" really mean?  I've asked myself this question often.  It sounds silly, but you see things everywhere now, asking others to "raise awareness".  I can't speak for everyone, but I will share what the phrase means to me . . .

Raising NKH Awareness means that you are sharing information on this disorder which both of our daughters were born with.  It literally means telling others about NKH - what it is, what it does and how you can help; and how can you help?  You can help by giving to NKH research!  You can also help by loving, encouraging and praying for other NKH families.  Don't discount any of these things, Friends!  As an NKH parent, as a parent of children with rare diseases, I promise that love, encouragement and prayer are all things that I crave, that I need, and that I long for on this wild journey. 

For us, raising NKH awareness also means sharing Ellie Kate and Lucy's stories.  We long for our daughters' lives to leave a mark on this earth, and that includes having their names coincide with NKH research (thanks to you, research donations have already been made in their names!).  More importantly we want their names to coincide with "Reckless Love".  Our desire is that you will learn to love better, deeper, wider, and more unconditionally because of what you have seen and learned through Ellie Kate and Lucy Belle. 

You've shown great support on NKH Awareness Day in the past, making us extremely proud of the village of people who are along for our crazy roller-coaster ride!  For the last few years, we've asked you to wear gold and blue, the color of our NKH Crusaders (our NKH mascot).  You've also boldly written the Girls' names on your arms, hands, wrists, etc for all to see; the goal being that people stop and ask you about the "rough tattoos:)", and you get the chance to raise awareness!  This year, we are asking you to do the following on May 2nd in honor of Ellie Kate, in honor of Lucy Belle and in honor of our NKH Family around the world . . .

• Wear Ellie Kate and Lucy's name (arms, sticky-notes, hands, etc)
• Share Ellie Kate and Lucy's Stories with others
• Give to NKH research which is going on now!
• Love a special-needs individual in a reckless way

You can also change your FB profile picture to help us get the word out:

 

 

By raising awareness, you are helping us find better treatment for those suffering from NKH.  By celebrating this day, you are encouraging those in the trenches, fighting against NKH everyday.  Participating in the day lets us know that Ellie Kate's name will be used - that her story will be shared and that someone's heart will be touched by it.  As parents, May 2nd gives us hope for the future; for better treatment for those like Lucy, who are living with NKH.  By taking part on this day, you remind us that we aren't alone.

 

Thank you for standing with us, for fighting with us, for celebrating this day with us. Thank you for helping us raise awareness on May 2nd.  WEAR.SHARE.GIVE.LOVE.

 

--Ryan