Letter to an Angel

Published: April 13, 2010  ~   1
By Laura Edwards
Daniel KernerDear Daniel,
I hope you can find a few minutes between adventures to read my letter! There must be lots of mountains to ski down in heaven. Are they as beautiful as Mammoth Mountain? As you’re racing down the slopes, feel the wind in your hair and the sun on your face, but also the presence of your family and friends. They love you so much, and they will always be by your side.
My little sister, Taylor, has Batten disease, too; in fact, that’s how I got to know your family. You and Taylor have so much in common! You are both very brave, and whenever the grownups get really sad, you remind them how to smile. And just like you wouldn’t let Batten disease stop you from going to the ocean and skiing, Taylor hasn’t let Batten disease stop her from going to school with her friends or singing and dancing.
I am afraid of Batten disease, but Taylor helps me stay strong, just like you help your mommy and daddy and Lauren and David stay strong. It’s easy to want to fight for fighters like you and Taylor. You are my heroes. I write lots of stories about Taylor, and I even wrote a story about you when you turned 10 years old in January. Everyone who read your story told me you inspired them, and I just said, “Me too!”
I am so sorry we weren’t able to find a cure for Batten disease in time to save you, Daniel. Everyone already misses you here, but you are with God now, and I know He will keep you safe. Your life inspired so many people, and I know it will help give me the strength I need to keep fighting for Taylor and all of the other children with Batten disease. Your mommy told me that after your surgery, she felt like she was seeing the brilliant sunlight of hope for the first time. Even though your body has left us now, Daniel, your spirit still burns brightly. I’m not surprised that someone who loves adventures as much as you do would bring so much hope to so many people. Your life was a miracle. And one day, because of the gifts you gave us, I will find mine.
Rest in peace, be filled with the grace of God’s love, and take those mountains in heaven by storm! We love you.
Love,
Laura
Daniel Kerner
1/13/2000 – 4/12/2010

For Daniel

Published: January 13, 2010  ~   0
By Laura Edwards

There is a special place in my heart reserved for a little boy I have never met.

Daniel Kerner is fighting late infantile Batten disease; tomorrow, he will turn 10 years old. His family and closest friends will celebrate this miracle over cake and ice cream more than three thousand miles away from my hometown.
Daniel is an adventurer. He loves to be outdoors – to feel the sun on his face and the wind in his hair. He loves to take walks and visit the ocean. For the past four years, he has celebrated his birthday by tucking into an adaptive bi-ski and skiing with his family. Always the warmest person on the mountain in his warming packs, goose down and assorted equipment and clothing, Daniel loves to fly down the slopes.
Tomorrow, Daniel will not make the trip to nearby Mammoth Mountain; instead, he and his family and friends will celebrate at home. His mom, Joanna, says “there is a run that is very special for Daniel. It starts below the Cornice and drops down into the bowls and crests at the top of Saint Anton.”
Tomorrow, you can make a run for Daniel. If you happen to find yourself at the top of Saint Anton, take in the crisp air and the sky and the snowy landscape around you, and remember that Daniel once skied there on his birthday. Most of you will not be near Mammoth tomorrow, though, so I’d like to ask you instead to make time for something that is special to you. It could be skiing down your own favorite run, jogging beneath the clear blue sky, reading a book, playing music or watching a movie with someone you love. No matter what is closest to your heart, make a place for it on January 13, and do it in honor of Daniel. Remember that each day is a gift.