by Jill Kelly
To the Hunter’s Hope Families: What a blessing it is to know you and share this most difficult journey with you. You are loved. There will be a grand reunion in heaven someday. I can hardly wait.
To our dear friends and ambassadors: You know who you are. Your companionship, confidence, love, and sincere desire to see our family rise above the heartbreak and devastation will never be forgotten. I love you and thank you for praying us through. P.S. Keep praying.
To my husband, Jim: To think that you and I have come this far… wow. I love you, Jim, and I always will. You may have been one of the toughest quarterbacks to play the game, but you were vulnerable enough to share this writing journey with me. Thank you so much for opening your heart and supporting me so eagerly. God has been so good to us. Thank you for walking through life with me. If I had the chance to do it all over again… I’d still pick you.
To my girls, Erin and Camryn: God must have been thinking about me when He made both of you. You girls make every day special. I love being your mother! Erin: Thank you for your suggestions and critiques. You are an excellent writer. Cam: Thank you for the “Keep Out While Mommy’s Writing” sign on my office door. I know it was hard, but thanks for being patient with me throughout this process. I wrote this book for you girls so you’ll always have an account of what our amazing God did for our entire family. Jesus rocks! I love you… more… just under Jesus.
To my mom and dad: I can’t even imagine where I’d be without your unconditional love, patience, and hope. Thank you for never giving up on me—never. You’ve blessed me beyond measure, and I thank God for you. Dad, it’s been hard, but I know God will bless you more than you can imagine someday. Mom, you are more like Jesus than anyone I know (except for HB, of course). For all the days you’ve taken care of me, I pray that I’ll be blessed to do the same for you. You’re an incredible woman. I love you both so much.
To my Hunterboy: Beyond words… immeasurably more than I could ever explain—I love you more than my heart can handle. See you soon, little buddy!
To Jesus: Nothing compares to You. You’re it. You’re everything. It’s all for You, because my life and all that I am and have—it’s all Yours. You’re my heart’s desire now and forever.
Appendix A
Hunter’s Hope Foundation
Hunter’s Hope Foundation was created to confront the critical need for information, awareness, and research in response to the threat of Krabbe disease and related Leukodystrophies. In addition, we strive to undergird and inspire Krabbe families as they adjust to the extreme demands of living with a terminal illness.
Our Mission
1. To broaden public awareness of Krabbe disease and other Leukodystrophies, thus increasing the odds of early detection and treatment.
2. To mount an aggressive public relations campaign throughout political, corporate, and private sectors in hopes of alerting key community leaders to the potential of newborn screening as a weapon in the fight against Krabbe disease.
3. To fund research efforts that will identify and develop new treatments, therapies, and ultimately a cure for Krabbe disease and related Leukodystrophies.
4. To establish an alliance of hope that will reach out to those directly and indirectly affected by Leukodystrophies, while addressing their urgent need for medical, financial, informational, and emotional support.
Among the primary goals of founders Jim and Jill Kelly is a hands-on appreciation for all children, along with a thankful heart toward God for these precious gifts of life. These bedrock ideals are vigilantly expressed throughout all the foundation’s programs and activities.
Core Values
To remain true to and passionate about our bedrock principles.
To be sure our family-oriented, wholesome public image is simply a clear reflection of who we are privately.
To always value individual contributions and never take another’s sacrifice for granted, no matter how large or small.
To pursue personal and professional integrity in all matters.
To hold the right of privacy of all individuals in the highest regard.
Krabbe Disease
Krabbe (crab ) disease, known among the medical community as Globoid Cell Leukodystrophy, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. Children who inherit the illness lack an important enzyme (known as GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is critical because it acts as the protective covering of the nerve cells, much like the insulation that surrounds an electric wire. When the enzyme GALC is deficient, toxic substances are produced in the brain, causing myelin loss, change to brain cells, and neurological damage.
There are four types of Krabbe disease: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid, causing death to occur in early childhood in the infantile Krabbe. It is found in all ethnic groups, and one in one hundred thousand live births in the United States are afflicted with Krabbe disease. Approximately 2 million people (or 1 out of 125) in the United States are carriers of the genetic deficiency that causes the disease. It is easy to diagnose, yet, as widespread as it is, awareness about this illness is very limited.
Until recently the only treatment options were limited to symptom management and palliative care. Now, a revolutionary treatment called a cord blood transplant is saving the lives of many young children and babies. This new method of treatment is bringing fresh hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies, and Lysosomal Storage Disorders.
Hunter’s Hope Foundation is fully committed to providing encouragement, education, and support to our families. Our hope and prayer is that you will feel connected to our family and join us in this fight against these devastating diseases. In striving to achieve our mission, our Family Programs encompass key areas designed to meet the needs of our families.
Hunter’s Homes
Since 2005, Hunter’s Hope has been providing support to families when their child needs to be hospitalized at Duke Hospital in Durham, North Carolina. A critical need for families when traveling to Durham from another city is being able to afford lodging accommodations for an undetermined length of time.
To lighten the financial burden, Hunter’s Hope offers three completely furnished apartments called “Hunter’s Homes,” located in Durham approximately 4.7 miles from Duke Hospital. Our Hunter’s Homes are accessible to any of our Leukodystrophy families (when available) while their child receives treatment (bone marrow or cord blood transplant, or pre- or post-transplant check-ups) at the hospital. Since we acquired the apartments, each unit has been occupied on a continual basis, with families staying from two weeks to one year. There is no charge for a family to stay. Donations are accepted if the family is able and desires to do so. It is our goal to provide families with a “home away from home” atmosphere during a very difficult time.
Family Care
Hunter’s Hope is committed to encourage, support, and assist families throughout their journey. Having a support network is one of the most important resources a family needs during this trying time. When families are ready to connect with other families, Hunter’s Hope can help bridge that support with other registered Krabbe and Leukodystrophy families. Our registry is used as a vehicle to introduce families to those living in closest proximity to their homes. It is a relief as well as an encouragement to speak with others who can relate to what your family is experiencing. In return, families may find themselves in a position someday where they can offer support to a family in need.
Families are also faced with questions regarding medical care. Hunter’s Hope offers assistance by helping families connect with some of the most knowledgeable and world-renowned doctors. These doctors may offer assistance in treating a child or guide parents as to what is best for their child at that time. In addition, Family Care offers support
in other areas through our Family Programs.
Equipment Exchange
Hunter’s Hope equipment exchange is designed to help our Krabbe and Leukodystrophy children who have adaptive equipment needs. Once your child’s equipment is no longer of service to him or her, please contact our Director of Family Programs to notify us of the available equipment. When another child needs the equipment, Hunter’s Hope will pay the shipping fee to send this equipment to the new recipient family.
Hunter’s Wish Gift
Definition of wish: to have a desire or hope for something unattainable.
A very special part of the Family Programs is our Hunter’s Wish Gift. This gift is granted to a family with an apparent need. Recently, Hunter’s Hope helped a family acquire an appropriate vehicle for their wonderful young son, Dalton, who requires transportation on a daily basis. With the foundation’s assistance, Dalton’s family purchased a handicapped-accessible conversion van. Through the continuous giving of our supporters, Hunter’s Hope is honored to have helped Dalton’s family with a gift that appeared “unattainable.” We are trusting that we can help more families in the future.
What Is Universal Newborn Screening?
Universal Newborn Screening is a state-based public health system that is essential for preventing the devastating consequences of a number of medical conditions not clinically recognizable at birth. All babies born in the U.S. receive newborn screening, yet not all babies are screened for the same diseases. Because the newborn screening requirements differ from state to state and are not universal, children are not being checked for many rare diseases.
Thousands and thousands of babies are born every day in the United States. Most babies appear healthy at birth, full of life and possibility. Yet they could be hiding a rare or potentially devastating disease. By screening every baby at birth, we can prevent serious mental or physical disabilities, even death. Also, by making the requirement universal in every state, we can ensure that no child will have to suffer unnecessarily.
To learn more about Hunter’s Hope, Krabbe disease, or Universal Newborn Screening, visit our website, www.huntershope.org.
Appendix B
The Hunter’s Hope Kids
After news of Hunter’s disease hit local and national media circuits, we were inundated with fan mail from all over the country. The outcry of support, get-well wishes, and prayers was astounding and encouraging. Through the thousands of letters, it soon became very apparent that we were not alone in our plight to help Hunter and kids like him. We had to do something.
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 few times even though he knows he’s way too old for her. They all have Krabbe disease. And they all radiate a hope and joy uncommon in our world today.
Every year I get to hold and snuggle a few of the kids, and this year it was Elias, Chance, and Madison. Elias reminds me so much of Hunter when he was little, so holding him was a special treat that brought back many very personal memories. Once he was out of his wheelchair and into my arms, I didn’t want our time together to end. I wanted him to fall asleep close to my heart like Hunter used to. Elias has long eyelashes and gentle brown eyes that penetrate your soul. He fit perfectly in my lap with his head tucked into the bend of my left arm. As I held him for as long as his mom and dad would let me, I ran my fingers through his soft brown hair and gently traced his eyebrows and little nose with my forefinger.
He reminds me so much of Hunter, and his birthday is in February, too. It’s hard, but the joy of being a part of his life, even if only for a brief time, is worth it. Elias isn’t quite old enough to be in The Boys Club yet, but he managed to get some quality time in with his buddies during his five-day stay at the symposium. Elias’s mom and dad are crazy about him, and their fear of losing him is evident. He wasn’t diagnosed with Krabbe disease early enough, so a cord blood transplant wasn’t an option for him. I hope and pray he’ll be back next year.
Chance is my buddy. I have watched him grow into a strong, handsome young man over the past four years. I was surprised at how mature and grown up he looked this year. Chance’s birthday is the same day as my wedding anniversary, and he also reminds me of Hunter—when he was older. As I write this, “Chancey Pants” (his mom calls him that) is eight years old and thriving despite the count
less hurdles Krabbe disease throws at him daily. He’s a tough kid and, like most of the young fellas in The Boys Club, Chance was diagnosed with Krabbe at fourteen months—too late to get a transplant. But he’s brave, and also like his pals, he continues to persevere in the battle for his life.
I could feel how much Chance grew over the last year when I held him in my lap. “Chance, you are getting so big,” I told him. “What’s your mommy feeding you anyway?”
Like Hunter, Chance learned how to communicate by blinking once for yes, and while he relaxed in my embrace we had a wonderful conversation. My fingers were drawn to his thick, brown, wavy hair, and my heart was his for a time. “Chance, your big-boy teeth remind me of Hunter. And I can tell you take such good care of them, right, Mommy?” He blinked, and I glanced over at his mother, Anne, and she smiled. Anne is tough and hopeful. She has no illusions about her son’s prognosis, but Chance is so full of life and joy. So they courageously persevere… together. Hopefully he’ll be back next year, too.
Hopefully they’ll all be back.
Madison is from Rochester, New York. She’s beautiful. Madison’s mom always makes sure Madison is dressed in adorable girlie outfits, usually every shade of pink, yellow, and purple. And her shimmering blonde hair is often decorated with fancy barrettes, pigtails, or braids. Madison was born six months before New York State started testing newborns for Krabbe disease. Had she been tested at birth, she would’ve been eligible for a cord blood transplant, which would have made all the difference in the world. But she missed the test. And every single minute of every day she lives, it’s a battle. And yet there’s a radiance about her that is unmistakable.