We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Saturday, July 21, 2012

A True Warrior

Our deepest and most heartfelt sympathies go out to the Laffoon Family, whose sweet little boy Wylder (also known as the "Warrior") passed away in the loving care of his parents yesterday morning. The Warrior was just 3 years old, but lived a life full of love and touched the lives of so, so many!!

A wonderful smiley pic of the Warrior --  I know how special & priceless these moments are.

When we first started researching Niemann-Pick Disease after Jacob's diagnosis, the Wylder Nation website was one of the best and informative places we found to learn about this horrible disease. I've been following Wylder's blog since Jacob was first diagnosed (about a year now). Similar to Kaitlyn's blog, I have learned an abundance of information about the progression of this disease and have been inspired, encouraged, and even strengthened to know that we're not fighting this battle alone. It took several months for me to finally reach out to Wylder's parents Shannon and Steven, but once I did they have been so supportive and wonderful! Recently, they even offered to give Jacob one of Wylder's pieces of adaptive equipment -- a gesture far beyond thoughtful.

I was devastated when I heard about the Warrior's passing and cried off and on throughout the day. As I've mentioned before, it is absolutely heartbreaking each time we lose another one of our Niemann-Pick friends and it reminds us of the harsh reality that our own family faces. Yesterday, I chose to spend the evening snuggling Jacob and enjoyed every precious minute with him as he drifted off to sleep, all the while thinking of something Shannon said in her last blog post -- "NO REGRETS!" The dishes, the laundry, the bills and the e-mails can all wait...

I never imagined that these amazing kiddos and their families would have such a dramatic impact on our lives, but they have all earned a most special place in our hearts.

Jake celebrating the Warrior's very special "UP" themed 3rd birthday from afar!

Please keep the Laffoon family in your thoughts and prayers, as they both mourn and celebrate the life of their amazingly strong little boy ~ a true WARRIOR!! Visit the blog to read more about this inspiring family.


  1. Thank you so much for this beautiful tribute. We are all family ... In this together. Love and hugs! Steven, shannon and warrior wylder James

  2. So beautifully written. The NPA community is small... but amazingly strong.

    Our hearts are broken and we are saying prayers for the Laffoons.

    Nanci & Mike Glassman

  3. You are all so amazing and strong and keep a constant reminder of whats really important in all our lifes!! Your all in my heartfelt thoughts, bless you and your strength inspires.

  4. My heart goes out to the Laffoon family. You are so right, enjoy every minute with Jake without regret. You are always in my prayers. If anything through my journey, I've learned that life is about living in the moment. You are amazing and such an inspiration.
    With much love,