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Gina, now she’s a fireball. She’s one of the funniest, spunkiest kids I know. Gina had a cord blood transplant when she was just three weeks old and she’ll turn double digits, ten years old, a few days before Christmas this year. Her older brother Nick was also born with Krabbe disease, but there was no treatment or newborn screening available for him in 1986, so he died at twelve months. She never got to meet her brother, but she will someday.

Even though Gina can’t do everything kids her age can, she’s a typical kid who just happens to need a little extra help to function on a daily basis.

I watched her dance around and around in her bright pink power wheelchair in front of the family audience for the Symposium Family Talent Show. Her song of choice was “Camp Rock” from the popular Disney movie. Her nails were painted bright pink to complement her sparkly bracelets and glittery Camp Rock t-shirt. Gina loves to dance, even if only in her wheelchair. Hope radiates from her contagious smile, and you can’t help but rejoice whenever you’re around her.

I e-mailed Gina’s mom, Anne, today to let her know that I was writing about her daughter, and after reading her response, my heart was so full that I just had to share what she said:

I prayed for you before I ever knew you, Jim, Hunter, and your family… after Nick was diagnosed on December 23, 1986. (Gina was born December 23, 1999, thirteen years later.) I was told that I would never meet another family with Krabbe, nor would there ever be any medical treatments for children born with Krabbe. I knew at that moment that it would take a family with great love and a much higher profile to be affected by this dreadful disease to prove those doctors wrong. I know that you and Jim were chosen for this endeavor to enlighten the world about Krabbe, and to also bring hope through Jim’s successes—and your inspiration and love—to save all of the children born with Krabbe and other rare genetic diseases. I knew that God would send someone to help our children—another child to bring some hope to other families and other children. I thank God for Hunter and your family.

That’s what Hunter’s Hope is all about. The children and their families, the heartbreak and the hope.

Gina and her girlfriend Laura are like sisters whenever they get together at the symposium. Laura is adorable and super-sweet. Although she and Gina have different personalities and unique interests, they have some very important things in common. Like Gina, Laura had a cord blood transplant, and she, too, has a brother in heaven. His name is Joshua and, like Gina, Laura never met her big brother either. But someday she will. If her brother were alive today, he would be seventeen years old.

Laura participated in the talent show this year as well. After her daddy helped her prepare on stage, Laura played a song on her lap harp: “The Ants Go Marching.” But she changed the title to “The Cats Go Marching.” A look of pride blushed over Laura’s face when she finished her song and we all erupted with applause and praise.

These kids are amazing. None of them should be here right now. They have Krabbe disease. Kids who suffer from Krabbe don’t participate in talent shows; they can’t dance and sing and play. And yet they can and do. Because by God’s grace there’s a cord blood transplant now; there’s a treatment for this horrifying, life-stealing disease. There’s hope! And that’s why there’s Hunter’s Hope.

You can’t be around the Hunter’s Hope kids and not catch a wave of their determination, joy, and courageous spirit. And to think that tragedy and suffering brought us together to form an unlikely bond that will endure beyond our lifetimes… it’s irrational and immeasurably more than all we would’ve imagined or hoped for. It’s an unspoken love without boundaries that mends brokenness and severs barriers. Extraordinary!

Hunter needed a miracle. Or maybe he was the miracle. Because from his life was borne a greater life that reaches out and rescues hopeless families and countless