Without a Word_ How a Boy's Unspoken Love Changed Everything - Jill Kelly [88]
We were also overwhelmed with media requests for television, print, and radio interviews. Everyone wanted to know what was wrong with Jim Kelly’s son. Oprah wanted to know. People magazine wanted to know. ESPN wanted to know. We were determined to put a face on this horrible disease most people had never heard of. The world needed to know about Krabbe Leukodystrophy and other inherited neurodegenerative disorders. So in September 1997, when Hunter was eight months old, the Hunter’s Hope Foundation was established.
I could share the unprecedented journey that our family has been on since the inception of Hunter’s Hope, but I’m not going to do that. (However, if you’re interested in learning more about the foundation and all that God is doing through Hunter’s Hope, please visit our website at www.huntershope.org.) Instead, I’m going to introduce you to some special children I know and love dearly. I can’t wait to tell you about these kids; they’re amazing. I’ve had the incredible privilege of meeting many precious children over the past twelve years, and I love every one of them. I would love to share all their stories too, but that would fill at least a few more books.
We’ve been on an emotional roller-coaster ride over the years, and at times we’ve wanted to give up and walk away from it all. But we didn’t and we won’t. Determination and dedication continue to prevail even though discouragement and doubt always lurk nearby. When our weaknesses and inadequacies tempt us to throw in the towel, another beautiful child gets diagnosed with Krabbe disease and we press on. And Hunter’s legacy lives on, beyond our hopes and dreams and by the grace of God, far beyond our vapor of life here on earth.
I continue to be in awe of how God has used our beloved son to spread hope, life, and love to countless people all over the country and the world. Yet just as inspiring are the children for whom we do what we do at Hunter’s Hope. They take our breath away, and their very lives encourage each of us to be a better human being… a patient and gentle spouse… a more gracious and loving parent… a sincere friend… a good listener… and a person who loves deeper and forgives every time. Though most of these kids will slip in and out of our lives without ever speaking a single word, their lives are filled with a contagious love that speaks clearer and penetrates the soul deeper than words ever could. They’re unforgettable, and I’d like you to meet some of them.
Mikey is from New Jersey. I was shocked when I saw him at the Hunter’s Hope Family and Medical Symposium this year, because he had grown so much since the last time I laid eyes on him. He’s a stocky young fellow now with leg muscles made for kicking soccer balls. His blond hair and blue eyes were as bright as ever, and Camryn was thrilled when she found out that he was coming, because it meant her best friend, Amanda (Mikey’s older sister), was coming, too. When Cam and Amanda get together, you never see them. They’re usually off somewhere having so much fun that we have to pry them away from each other at the end of the day. They have a lot in common, and walking through the Krabbe battle with a beloved sibling is at the top of that list.
Mikey usually hangs out with Chance and John. John didn’t wear his vest this year, and everyone who knows him noticed. I heard a number of people ask him, “John, where’s your cool vest? I was hoping to see a few new buttons this year.” John’s vest reminds me of a Boy Scout. It’s covered in all sorts of pins and medals, honors only a cool boy like John and those who know and love him can fully appreciate.
When the boys get together, they usually hang out with their wheelchairs all lined up in a row next to each other near their moms and dads. They’re affectionately known as “The Boys Club.”
This year, little Miss Madison was the only girl with the courage to hang out with The Boys Club, and what a sight to see! We caught John trying to hold Madison’s hand a