By: Bailey Foster • Photos courtesy of Jill & Jim Kelly

hh2

Since their last interview with Positive Impact Magazine, Jim and Jill Kelly have not slowed down. If anything, the couple keeps finding more ways to share their story and bring hope to people around the nation. The family’s drive to make a difference all points back to one boy, a boy who, according to Jill, “never spoke a word but changed everything” – their son Hunter.

As a Hall of Fame quarterback for the Buffalo Bills, Jim Kelly was known for his toughness during his tenure with the team that lasted from 1986 to 1996. He led the Bills to four Super Bowl appearances before he retired and was eventually inducted into the Pro Football Hall of Fame in Canton, Ohio.

Yet, even with all his accomplishments on the football field, Jim readily professes that no one taught him more about toughness and about life than his only son.

Hunter Kelly was born on Valentine’s Day, also his father’s birthday, in 1997. Jim and Jill were ecstatic to welcome their first son into the world – the son that could follow in his daddy’s footsteps. Early in Hunter’s infancy, however, it became clear that something was wrong.

After two false diagnoses, Hunter was eventually diagnosed with Krabbe Leukodystrophy, an inherited terminal disease that attacks the nervous system. Just months after their son’s birth, the Kellys were given the news that no parent ever wants to hear. Hunter would not live to see his second birthday.

In one interview with Positive Impact, Jill spoke about the devastation the couple felt on that heart-wrenching day: “There are very few words in the English
language to describe the kind of insult to the heart and the kind of overwhelming grief and despair that happens when you’re told something like that.”

Through their journey with Hunter, Jim and Jill would face enormous struggles – the suffering of their child, tension in their marriage and uncertainty in
every new day. Yet by learning from their son and looking beyond themselves, the Kellys would also find grace, joy and hope.

With silent courage and strength, Hunter took everyone by surprise. This incredible boy lived to be eight and a half years old. Though brief, his life spurred a
miraculous transformation in the Kelly family. Forever changed by the life of their son, the Kellys became determined to share the hope they had found.

When Hunter was eight months old, Jim and Jill established the Hunter’s Hope Foundation to bring this faith to other families who were suffering. Through the foundation, the Kellys are able to share the story of their son and educate the world about Krabbe Disease and other leukodystrophies.

With joy radiating from her voice, Jill shared with me how the impact of Hunter’s Hope has exceeded anything they could have ever imagined. “God has clearly opened wide our opportunity to help people!”

The Kellys’ passion and perseverance are far-reaching, from the Hunter James Kelly Research Institute that investigates effective treatment options for Krabbe Disease to the push for universal newborn screening, which would allow every state to test for 55 treatable diseases, including Krabbe.

Through Hunter’s Hope, the Kellys continue to tirelessly pursue universal screening, traveling from state to state to meet with governors and healthcare officials. In 2008, President Bush signed the Newborn Screening Saves Lives Act, but this bill will not be implemented on a national basis until it receives the
required funding.

Since their son’s death in 2005, the Kellys have found even more ways of sharing Hunter’s incredible impact on their lives. In 2010, Jill released her inspirational and vulnerable account of their journey with Hunter, Without a Word. She also wrote two additional books to comfort others during difficult times – “Prayers for Those Who Grieve” and “Prayers of Hope for the Brokenhearted.”

The Kellys’ young daughters have also started sharing their hearts with the world, revealing the immense joy and wisdom their brother brought to their lives. With the help of her mom and older sister, 11-year-old Camryn Kelly released her girls-only book series, “Hot Chocolate with God,” in September 2011.

Both Camryn and her 15-year-old sister Erin share their insights on the book’s interactive website, www.hotchocolatewithgod.com.

“We’ve been amazed at the response we’re getting,” Jill said as she told me about the project. In fact, the response from young girls has been so strong that the Kellys have submitted two more books to the series.

Jim’s experience as Hunter’s father has planted an unquenchable desire to help other children as well. He established the Kelly for Kids Foundation in 1986, before Hunter was born. Jim’s continued work with the organization benefits disadvantaged and disabled youth in Western New York through grant
money to local children’s ministries, including the one closest to his heart – Hunter’s Hope.

So after all the Kellys have endured, what motivates them to keep pursuing so many causes and commitments? As I listened to Jill, her words spoke loud and clear for the entire family.

“My motivation is to honor God,” she explained without hesitation. “He has blessed us in extraordinary ways, and I know Jim would say the same.”

Though Hunter is gone, his determination, strength and hope linger in the hearts and souls of his loved ones. In eight fleeting years of life, this amazing child revealed what the Kellys have come to understand and share with others – there is always joy to be found, always a purpose in the midst of pain. In life, Hunter
transformed his family. In death, he left a legacy that will last forever.

It’s impossible to witness the Kellys’ awe-inspiring sense of hope and not want to take part in their positive impact. Fortunately, there are plenty of ways to get involved with what this amazing family is doing. Visit www.huntershope.org to learn about what diseases are included in your state’s newborn screening, then seek out your state legislature and let your voice be heard. Hunter’s Hope also thrives on the donations of people across the world. You can make a direct donation through the website or click the “Get Involved” link to find fundraising events in your area. The Kelly for Kids Foundation always welcomes donations as well – just visit www.kellyforkids.com to contribute.