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.
1/13/2000 – 4/12/2010