To Infinity and Beyond

By Laura Edwards

Daniel skiing at Alpine MeadowsDaniel Kerner always loved the outdoors. He loved to visit the ocean and mountains and feel the warmth of the sun on his face and the wind in his hair. He loved his family and friends. He loved life.

Daniel became an angel on April 12, 2010 – two years ago tomorrow.

I never met Daniel, but my parents and Taylor met him on several occasions, and I’ve shared his story before. Daniel and my sister will always be linked on paper because they formed the bookends of a historic clinical trial in Portland, OR (Daniel came first; Taylor went last). But Daniel’s story means much more than that. And his courage had – and continues to have – an incredible impact on me.

It’s difficult to believe that it’s been two full years since Daniel earned his wings. In a world ruled by Batten disease, it’s easy to lose track of time – and children. So many children are lost (and eventually, all of them; Batten disease is universally fatal). So many children whose hands I’ve held or stories I’ve hugged close to my heart.

It’s amazing how time passes; amazing how the world manages to keep chugging right along after the premature loss of an angel like Daniel – without even missing a beat. But no matter how many anniversaries come and go or how many children we lose, we must never forget. And we must never stop fighting.

I’ll go to infinity and beyond, Daniel – whatever it takes – to beat this monster for angels like you.

I wrote a letter to Daniel on April 13, 2010 – the day after his passing. Read it here.

Letter to an Angel

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.
Daniel Kerner
1/13/2000 – 4/12/2010

Pray for Daniel

By Laura Edwards

I wrote an article about Daniel Kerner that appeared in our winter e-newsletter. Daniel, who turned 10 years old in January and is battling late infantile Batten disease, and his family have a special place in my heart. Tonight, they need your prayers.

If you don’t receive our e-newsletter, you can read Daniel’s story on the Taylor’s Tale website here.

To Daniel, Joanna, Marc, Lauren, and David – stay strong.

For Daniel

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.

The Quilt

By Laura Edwards

Mom is back from San Diego; she arrived on the red eye this morning. I have many things to report from her journey out west and will do so in time. Tonight, though, I just want to share some reflections from her time with Daniel Kerner, who is nine years old and has late infantile NCL, and Daniel’s mother, Joanna. Together, Daniel and Taylor form the bookends of the historic clinical trial in Portland, OR. Daniel was number one; Taylor was the sixth and final participant. Joanna and my mom have talked with one another countless times across cyberspace and telephone wires, forever connected by their children’s at once great hope and great sacrifice that was their experience in Portland, but they had never met in person. Since the day I was first contacted by another family stricken by Batten disease, as ours is, I have struggled to put words to the relationship that is forged between us all, even if the road between us stretches thousands of miles, as in the case of the Kings and the Kerners. However, Joanna’s most recent CaringBridge journal post recounting the time she and Daniel spent with my mom described it beautifully, so I emailed Joanna and asked her if she would share her words with me. She said yes, so I’ll share them with you now:

“Meeting Sharon King, Taylor’s mom, for the first time was immediately comfortable and welcoming. There was no way that I would not bring Daniel to meet Sharon. We exchanged gifts for the kids; Taylor sent Daniel a UNC baseball cap signed by the Women’s Basketball coach Sylvia Hatchell, and Daniel gave Taylor his newly edited Braille book entitled Love. Someday, Daniel and Taylor will have an opportunity to meet in person. Until then, they will have a coast-to-coast friendship through their moms. There is a special bond the moms share that is on a level deeper than any peer friendships. We are woven together into a different cloth of life that creates a strong and compassionate quilt, assembled painfully through heartbreak and upheaval, grief and acceptance, strength and perseverance. A quilt, we hope, big and strong enough to smother the dragon and deliver our children back to their childhood dreams.”

As I write these words from my living room on the East Coast, Daniel is on the West Coast, probably sharing the company of his parents and his older brother and sister, perhaps eating dinner with them, no doubt making happy memories (because they, with the exception of our constant search for the cure, are the central purpose of every day we are given). Thousands of miles away, I am searching for answers, in the world out there and within my heart. I am fighting for Taylor. I am fighting for Daniel.