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krabbe disease

Jill Kelly, Notre Dame grad and wife of former Buffalo Bills QB, talks about faith, hope and heartache in upcoming book

By Daniel Crofts

It all began with Hunter James Kelly, the little boy who wasn't supposed to live to see his second birthday.

Shortly after he entered this world, Hunter was diagnosed with Krabbe disease, a neurodegenerative disorder that affects one in every 100,000 children.

While his battle with the condition did ultimately cost him his life, Hunter beat the odds and made it to age 8. This was partly owing to his own strength and will to live, but also to the tireless efforts of his parents, who worked very hard to make sure he had the care and support that he needed -- both medical and personal.

His father is Jim Kelly, former quarterback for the Buffalo Bills. His mother is Jill Kelly, a former model, a longtime Attica resident and an alumnus of Notre Dame High School in Batavia.

The Kellys were devastated by the loss of their son, and this devastation could easily have shattered their family.

Instead, it brought them closer together.

The same devastation could also easily have snuffed out any faith they had in the possibility of any meaning, purpose or goodness in the universe.

Instead, it drew them into a close, personal relationship with a loving God.

Hunter's ordeal, the hurdles Jim and Jill faced in their marriage, their love for their children, the faith they both found...these are some of the subjects that Jill covers in her new memoir, "Without a Word: How a Boy's Unspoken Love Changed Everything." 

"Without a Word" will be Jill's third published work. The others are "Prayers for Those Who Grieve" and "Prayers of Hope for the Brokenhearted."

As you might expect, the memoir is told mainly from Jill's perspective. But it also includes contributions from Jim and the couple's two daughters, Erin Marie and Camryn Lynn. Each member of the Kelly family shares his/her experience as part of a family that has suffered together, loved together, struggled together, and believed together.

Jill will be featured on NBC's "Today Show" on Sept. 10 (the day after the book's release) and on "Fox and Friends" on Sept. 11.

In the meantime, she was kind enough to take some time out of her busy schedule to talk with The Batavian about the faith that has sustained her throughout all of her ordeals and given her a strength, peace and joy that inspires everyone around her:

Q: How has your faith journey played out through all of this (the loss of your son, etc)?

A: My faith is what sustains me, even to this very moment. But I didn't turn to God or realize I needed Him so desperately until Hunter got sick. I never thought about the things of God with any depth until that point. I grew up with the religion aspect of faith, but I didn't realize that God was as real and as involved in my life as He actually was. He's an intimate God. He cares about all the details of our lives and orchestrates the things around us in order to help us draw closer to Him.

I think people have a choice -- in troubled times, they either turn away from God or they run to Him. In my desperate need for hope and heaven and healing -- because I was devastated -- I ran to God. And I was surrounded by other people who walked by faith, which was very encouraging. They helped me to seek God and to learn more about Him. It changed my whole life, the way I look at our very breath.

Q: Your friends say you and Jim have been "transformed" by your faith. In what way?

A: In every way. We live every moment in light of eternity. I live with the knowledge that I'll see Hunter again, that heaven is real, and that God has a purpose in our pain and suffering. Although we still grieve (for Hunter) at various times and in various ways, my great joy is in knowing what's to come. I'd say I live every moment of life differently as a result of trusting in Christ for everything I hope for.

I don't credit myself here -- it's not my faith as such that I'm trusting in, it's the Person behind my faith. Putting faith in Him has definitely transformed our marriage and our family. We live differently, we love differently, we see differently...everything's changed.

Q: Can you talk a little bit about your marriage, and the role your faith and struggles have played in that?

A: Every marriage struggles. When you have two people coming together, each one having his/her own issues and being a completely unique person, you're going to have problems. You have to choose whether to work it out or give up. With me and Jim, so much was stacked against us -- statistically, in terms of being married to a celebrity athlete and everything that goes along with that, plus having a desperately sick child and everything that goes along with that. We found ourselves in a position where nothing was for us except for God.

We've learned that marriage is not a once-in-a-lifetime thing. It's a process in which God helps us live out our lives, first of all for Him, and also for each other and for our children. Each day, we know that we need help and that we can't do it alone. Our marriage wouldn't survive without Christ, without prayer. It's a lot of work, but the blessings far outweigh the hardships. Most of all, we know we're honoring God and blessing our daughters by doing so.

Q: On your website, you've written that Hunter "loved those around him without being able to speak." How so, exactly?

A: Like you said, he couldn't talk, and he also couldn't move on his own. He couldn't smile or give you a hug or a kiss, or anything that we would normally understand as showing love. But just his very presence...I mean, I'm his mom. I took care of him, and I knew him. I know him. I knew he loved us. I mean, just the fact that he was alive, and loved life, and wanted to live, and struggled beyond anything I've ever experienced and yet...was full of joy. It's really hard to articulate, but I do the best I can to share this in the book. I hope the readers can grasp what I'm trying to say about Hunter, as hard as it is to explain.

Q: Would you say that the pain you went through and the experience of Hunter's suffering helped you to get closer to Christ in His suffering?

A: Absolutely. There's no doubt about that. I didn't understand that there can be beauty and value in suffering until I was able to take Hunter's suffering to the Cross. There is beauty in suffering if we have a place to take it where there's hope. I mean, Jesus didn't suffer on the Cross for nothing. If you're a Christian, you believe there is hope because of what Jesus did, and that we can take our suffering because it's not the end of the story. Hunter's suffering was not the end of his story -- his story is that he's with God, and we (meaning Jill and her family) will be there one day, too. And the story goes on. That hope changes the way you live, believe, treat each other...everything. That's the reason for the subtitle of the book -- God used this little boy to change everything!

Q: One of the typical objections of atheists and other skeptics of religion is, "If God exists, and if God is good, then why is there so much suffering in the world? Why do bad things happen to people?" How would you answer that, based on your experience?

A: I would say that I've seen the good that can come out of suffering. Also, you know, it's not my place to convince an atheist that God exists. God has already displayed Himself in creation. The fact that we have another breath is His goodness. Do I understand fully why God allows evil in the world the way it is, and disease, destruction, etc? No, I don't fully understand -- but that's the beauty of who God is. I don't understand all of Him. He wouldn't be God otherwise! He's beyond my comprehension, and He's beyond anything we can know. But, He has chosen to reveal Himself to us through His Son, Jesus Christ, the Flesh and Blood of the God of Creation. Most people who would make the argument you mentioned have never read the Bible. I would say that until you've spent time getting to know this God Who has chosen to reveal Himself in His Word, don't say anything! (she said this last part with a bit of playful laughter in her voice)

And as far as saying, "If God is good, then...," who are we to stand in judgment of God? You know? Who are we to walk up to Him and say, "Who do you think you are, God?" We're created beings who don't have the capacity to fully understand these things. And I'm thankful for that, because I can at least trust what I know. I can trust what God says versus trying to figure Him out.

Q: You talk about your children and how much they mean to you, both on your website and in your book. What do you think Jesus meant when He said, "The Kingdom of Heaven belongs to ones such as these (meaning children)?"

A: Children are so trusting. They're willing to believe the unbelievable. They just have a way about that them receives truth. It sounds crazy, but we know it's true. We know children -- they think beyond the ordinary; they think the extraordinary. I think they tend to be more accepting of truth than we are, as adults. What we need to do is just allow the truth to be the truth, and not let our pride, our preconceived notions, our circumstances or our experiences dictate truth. Because truth is beyond what we can see. Also, children have this openness to the simplicity of faith. Faith is really a very simple thing -- you either believe or you don't! What Jesus is saying is, "You need to come like a little child." That way you can just accept what's true and receive the gift. You can receive the love of God, and what He has done.

Q: Do you have any advice for people who want to have faith, but face certain obstacles or are struggling with hurdles...whether emotional, intellectual, or otherwise?

A: Christ says that if you seek Him, you will find Him. He made a promise. He's not running away from us, He's running towards us. And it really has nothing to do with us, because He's the one who starts everything! So I would say that if you're seeking God and pondering these things -- and yeah, you might have different hurdles to overcome, but the fact that a person is even seeking God is evidence that God is already at work in that person's heart. Of course, we could choose to ignore Him and turn away, and that's our choice. But again, the fact that we're seeking Him is a sign that He's drawing us to Himself. My advice would be, don't give up! Jesus has promised never to leave us or forsake us. He's made many promises and kept every one. This isn't something I would know if I hadn't read His Word. I'm a student of the Word, and I spend time with it every day.

Jill's book will hit the shelves all across the country on Sept. 9, but is available now in Buffalo area bookstores -- including the Barnes & Noble on Niagara Falls Blvd. and Bender's Christian Supply Store on Sheridan Drive.

For more information on the Kelly family and Jill's writings, please visit her website:

To learn more about the Hunter's Hope Foundation, which Jim and Jill founded in honor of their son and for the purpose of helping children with Krabbe disease, go to

Photos courtesy of Jill Kelly

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