by Jill Kelly
In the midst of all the suffering these children endure, there is hope and peace. And the love that pours out of their parents is so abundant and unconditional. These are the kind of people you want to spend your time with, pour out your life for—you want to be like them because you know they’re real and authentic. I’m so thankful God brought us together for such a time as this—to love, pray, laugh, and cry together, and to carry one another’s burdens and extend a comfort only we can to each other because we’ve been there; we get it. It’s extraordinary.
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 children we’ll never know.
That’s our hope and our future. And maybe that’s what God meant (as it pertains to Hunter, our family, and all who are touched through Hunter’s Hope) when in the Old Testament book of Jeremiah He proclaimed, “ ‘For I know the plans I have for you’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future’ ” (Jer. 29:11).
We’re hopeful… very hopeful… that our future is secure and safe in the hands of a mysterious God whose love is constant even when we don’t always understand His ways. That’s our hope and future. How else can you explain the incredible hope that blossomed from a child’s suffering?
It’s indescribable. And I suppose it should be, since the little boy behind it all never spoke a word. Yet his unspoken love… changed everything.
Appendix C
“Team Hunter” Memories
Dear Hunter,
I praise God for each and every moment I was blessed to be in your presence. Each memory that I have with you is so special to me.
One day that I will never forget is August 3, 2005. I had been praying to spend more time with you, and God answered this prayer in the most amazing way, as only He can. Instead of doing Kingdom Bound during the day, Mommy asked me to spend Monday and Wednesday with my little buddy. I have to tell you that there is no other place I would have rather been than with you.
I loved listening to Mommy and Daddy on FLN with you and Ellen. I know you enjoyed listening to them in Noah’s ark and hearing Mommy’s adventure with her water bottle.
I’ll never forget you, Ellen, and I going out onto the deck, waiting for Grammie to come home. Ellen and I hid behind the grill so that Grammie only saw you as she walked up to the door. How surprised she was to see you outside by yourself! (Of course, Ellen and I popped out of our hiding spot shortly after she saw you.)
I love how you moved your feet for us, Hunter. We told you which one to move, and you wiggled it. Thank you so much for showing us all the wonderful things God helped you do!
Hunter, I also want to thank God for His mercies that are new every day. He is so amazing! Before I left that day, I waited to ask Grammie a question and I walked over to you three times to give you a kiss and run my hands through your hair. I just love how God cares so much to arrange such a special moment for me.
Even though that was the last moment I spent with you here on earth, I know I will see you again in heaven. Thank you for all the laughter and smiles you brought to everyone!
I love you, Hunter. See you soon!
Love, “Jennyfer”
(A dear friend and nanny)
Dear Hunter,
Looking back, I have so many “favorite” memories of you. I remember many times that I sat with you while you were taking your bath and I got to watch you show off by moving your head. I remember watching your eyes light up when Mommy walked into the room or you heard her voice. Prayer parties with you were some of my favorite times! I loved worshiping Jesus with you.
I will never forget the time that we let you taste a candy cane and you bit it off! We didn’t know what to do, and we had to figure out a way to get it out of your mouth, silly boy. I loved playing with your soft, curly hair or lying down next to you on the bed while you were watching Rescue Heroes, and I loved building the ceramic volcano with you. But the memory that sticks out most to me was that day in Ellicottville in July 2005. Your whole family was at the symposium and it was just you, me, and Ellen at the lodge.
Ellen asked me to watch you while she took care of something, so I was able to just hang out with you for a little bit. I remember talkin
g, laughing, playing a game and singing Bible songs. You probably thought I was crazy, but I remember the happiness in your eyes because it equaled the joy in my heart. I am so thankful that God gave us that time together.
Hunter, without you in my life, I would not be the same person that I am today and I praise God for your influence. Thank you for teaching me what it means to live. Living does not always mean accomplishing everything on your to-do list, but it is learning to love. Thank you for causing me to slow down and enjoy the moment. Thank you for stretching me beyond my comfort zone and teaching me what selflessness really means. Thank you for teaching me what it means to serve like Jesus calls us to serve—in humility. You helped me to discover how to be more like Him every day.
I still have so much to learn, but your life caused me to evaluate mine and to decide how I want to live it. You encouraged me to claim my faith as my own and to wholly and completely surrender my life to Jesus Christ. Losing you broke my heart, but I have watched God mend it and bring healing to my life. Thank you for loving me enough to challenge me to be more like Jesus. Hunter, thank you for teaching me how to live. I’ll see you soon, bud. Soon and very soon.
Cassie
(A dear friend and nanny)
A memory is a picture in your mind. I have a beautiful memory of some very quiet moments with Hunter. These moments were on Good Friday two years ago (2003). It was between 12:00 and 3:00 p.m., the hours Jesus was on the cross. I had the privilege of being able to read to Hunter about the Easter story. He was on his mat in the living room, and I sat down right next to him. As I read to him and held his hand, I felt a sense of peace like I had never felt before. It was very, very quiet. Only Hunter and I were home at the time.
I remember telling him about how, when I was a child, we read the Easter story on Good Friday between 12:00 and 3:00 p.m. and then went to church to ring the bell thirty-three times. This was at 3:00 p.m. when Jesus said, “It is finished,” and died. The thirty-three times symbolized how long He lived here on earth.
I remember telling Hunter how much Jesus loves him and how much He loves each and every one of us, and how this “darkest day in all the world” was only temporary. As we talked, he listened. Hunter’s gentle spirit filled the room and filled my heart. His precious, precious breathing filled my ears like the most beautiful music I had ever heard. It was as though Hunter wanted to tell me, “Oh, Ellen—I know that darkest day was only temporary. The miracle of Jesus rising from the dead on Easter was just one of the many continuous miracles of life. He gave His all for us and still does this today.” And Hunter told me with his sweet eyes that it’s always going to be okay.
I’m so thankful that I have these Good Friday moments to treasure forever. God gave me the beautiful privilege of sharing so many moments with you, Hunter.
Love,
Ellen
(Hunter’s RN)
I have so many wonderful memories of Hunter. It was very difficult to pick just one to share. I finally decided to recall the first lesson I taught him. Although it wasn’t the first time we had met, it was our first official day as student/teacher. I can remember him sitting so proudly in his chair, wrapped in his Scooby Doo blanket and wearing his Buffalo Bills hat. He welcomed me with a look I shall never forget. It was a look of a child who had a desire to learn.
We worked outside on the deck and I taught him about apples. We read a book about Johnny Appleseed, cut an apple in half to make star prints with paint, and made a mobile of an apple as it was being eaten out of foam. At the end of the lesson Hunter used a highlighter to trace his name with assistance, and then on his own he drew a picture. During the entire lesson, he was so interested in hearing everything I had to say. I could tell with each sentence that he was eager to hear more. Hunter was so cooperative and so willing to allow hand-over-hand assistance. He was so determined to complete each task I gave him.
Hunter really seemed to enjoy our time together that day, as did I. I knew it was a match made in heaven. I thank God so often for the honor of being handpicked by Him to be Hunter’s second-grade teacher. I shall always and forever treasure my time with him. Although Hunter was the “student” and I was the “teacher,” many times I left your home feeling like I was the student. Your son taught me so much about life, about God, and about himself. Jill, thank you for allowing me to teach Hunter and for sharing him with me.
Love,
Bonnie
(Hunter’s favorite teacher)
Wisdom is so misunderstood in our world today. Hunter was a child who was never confused about what it means to be truly wise. He knew what God’s plan was for his life, and he did God’s will here on earth with humility and great understanding. How blessed I have been to be able to witness such wisdom in such a young child.
I am thankful for the experience of being able to touch, hold, and learn from a child whose body was so wise. To be trusted and guided by his little body when he was just a few months old was profound. With awe and amazement I continued to observe his body grow in wisdom and understanding of what he needed to do on this earth until he was called home to heaven. What a lesson Hunter and his family taught me about using every gift you have been given, every day, to its fullest, to do our Lord’s will. I have learned that this is what it means to be truly wise.
My mind and heart are filled with memories of my buddy Hunter, watching him grow from an infant into a beautiful child, watching his family (who were chosen specifically for him) train up their child in the way he should go, and experiencing life with a team and family who have changed me as a therapist, wife, mother, and daughter of God. It takes someone full of wisdom to change lives. God in His wisdom chose a child. He chose Hunter James Kelly. God is good.
“Who is wise and understanding among you? Let him show it by his good life, by deeds done in the humility that comes from wisdom” (James 3:13).
“The fear of the LORD is the beginning of wisdom; all who follow his precepts have good understanding. To him belongs eternal praise” (Psalm 111:10).
Memories:
Hunter sleeping in his crib.
Quiet time together on Saturday mornings in Hunter’s bedroom upstairs.
Massaging Hunter’s legs and feet.
Hunter moving his arms up and down over and over again.
Hunter’s patience when adjusting his Kid Kart.
Hunter’s first time in his stander.
Hunter’s faith when he was “jumpy” and I was at a loss about what to do to help him.
Hunter’s enjoyment when watching squirrels.
Butterscotch (when she was a puppy) lying next to Hunter.
Hunter’s music.
Hunter’s sense of humor.
All my love,
Kathy
(Hunter’s occupational therapist)
The best memory of Hunter that I can share is the last night I spent with him. Here are my thoughts….
I didn’t know why at the time, but God placed it on my heart to work the overnight shift on Wednesday, August 3, from 10:00 p.m. to 10:00 a.m. Looking back, it was a blessing and God’s hand was upon us that night.
Hunter had mucus plugs that blocked his airways at midnight and 1:00 a.m. Grammie was there to help me, and he started breathing again after suctioning, repositioning, and increasing his oxygen (his oxygen saturation was in the 20s).
I constantly talked to Hunter for the next two hours, softly reminding him to take “Reggie” breaths so I could give her a good report when she asked me about him, and to reassure him that I was still there. During this time I quietly read his prayer journal to him, not once but twice! I also put a couple new entries into his journal, the last one being from 1 Peter 1:3–4… a gift from God to Hunter and you and me: “In his great mercy he has given us new birth into a living hope… from the dead, and into an inheritance that can never perish, spoil or fade—kept in heaven for you.”
We also prayed a lot that night. I put my hands on Hunter and prayed each time before I repos
itioned him, asking God to help the transition go well and to help Hunter continue breathing. He answered my prayers and Hunter was able to relax and fall asleep around 3:30 a.m.
I am also thankful that my husband got to meet Hunter on Thursday morning. He rode to Grammie’s house with Ellen so he could drive me home from working the night shift. He came into the house and said, “Hi, Hunter.” I always talked to Hunter about Mr. Warner and showed him pictures of his marathon, and now he got to meet him face-to-face. What a blessing that was for John and me!
I am so thankful to God for allowing me that special night, one-on-one with Hunter. He knew that would be my last time with him, and He made it so special!
Love and Blessings,
Barb
(Hunter’s RN)
Today has been filled with thoughts of you and your son, so this present has been a joy to assemble. The picture of your son was taken on another birthday—Hunter and Jim’s—when that little preschooler was determined to make a delicious cake for his dad. As usual, Hunter was not thinking about himself, but about how he could bring joy to someone else. Marion [Hunter’s teacher at the time] and I worked for about two hours to get everything just right, and he totally loved digging right in with both hands. What a fabulous day that was, and what insight it provided into your son’s personality. How many times I would witness that love and determination over the years, and how many times it would spark love and determination in others.
Hunter was with us throughout this special day today. This morning, the biggest dragonfly ever perched itself on our kitchen screen for several hours, allowing us to observe it from all angles and notice how amazingly complex and beautiful it is. Robert said that he thought Hunter would really like the dragonfly because he likes bugs so much.