Wednesday, August 10, 2005

Gains Through Losses

I've been feeling a bit sad the past few days. Hunter Kelly, the 8 year old son of Jim Kelly (former Buffalo Bills Hall of Fame QB) lost his battle with Krabbe's Disease this past weekend. Oh, sure, the little tyke wasn't expected to make it to his second birthday and he had six years longer than anyone could have hoped for, but that doesn't make it any less sad that he lost his battle.

Add to that today's news that Dana Reeve, widow of Christopher Reeve, has announced that she's battling lung cancer. I immediately thought of their young son, Will, who is thirteen years old. That boy was 3 years old when his father was paralyzed in a horse riding accident and, for the next nine years, only knew a father who was paralyzed and fighting with everything he had to make people aware of spinal cord injuries, even subjecting himself to "experimental" treatments. And now that young man has another challenge to face.

Often I wonder if these sorts of tragedies are all part of some larger plan. We often look to the heavens and ask "Why?" "Why do you allow so much suffering, and more to some than to others?" My Aunt Wanda always says "A cross to fit the back." Maybe...

Hunter Kelly was born to a wealthy athlete. He was diagnosed with Krabbe's Disease when he was four months old, and the Kellys were told that he probably wouldn't live to see his second birthday. I can't even begin to imagine the devastation Jim and Jill Kelly must have felt when they got this report. But, they used their celebrity and their resources to establish Hunter's Hope, a foundation dedicated to promoting awareness of this disease, as well as research to help ease the symptoms, as well as into finding a cure. But, it didn't stop there. As a result of the Kelly's efforts, New York State has adopted a more comprehensive form of newborn infant screening. You see, the thing is, if Krabbe's is detected at birth, it can be successfully treated with a cord blood transplant, which halts the disease's progression. But, without that early detection, the disease is fatal. Kelly testified before the Advisory Committee on Heritable Disorders and Genetic Disease in Newborns and Children regarding this early detection. The Kellys have worked tirelessly on this matter. With all their financial resources, they were able to experiment with equipment and therapies for Hunter. I believe strongly that their love and dedication is what allowed this child to live for 8 years - of course, their financial resources played a big role in the extension of their son's life, but I guess the point is that, without those financial resources, nobody would have heard of Krabbe's, and the significant successes that Hunter experienced with his therapies can now be passed along to other children afflicted with this disease.

Take a look at some of the other professional athletes who have children with diseases. Mark Ripien lost his son to brain cancer, and worked tirelessly to heighten awareness of this insidious disease. Dan Marino and Doug Flutie both have autistic sons, and have dedicated enormous resources to foundations that heighten awareness of autism and it's many treatment modalities. Boomer Esiason's son has Cystic Fibrosis, and the Boomer Esiason Foundation works toward finding a cure and different treatments.

Anyone alive in the 1980s remembers the shocking revelation that Rock Hudson was suffering from AIDS. With tireless efforts of stars such as Elizabeth Taylor and Doris Day, AIDS finally had a face in American households. AIDS was real, and it wasn't going away. It would be two years AFTER Rock Hudson's death before President Ronald Reagan would speak publicly about AIDS.

Christopher Reeve's tireless efforts to inform, educate, and heighten awareness of spinal cord injuries have, in my humble opinion, done more toward treatment of these injuries than any other single person could have ever accomplished. Perhaps it was cosmic irony that "Superman" would be struck down in such a way, but in my mind, it added strength to Reeve's efforts after his injury.

In late July, 1981, 6 year old Adam Walsh disappeared from the toy department of a store in Florida. It was later learned that a store clerk or guard had chased four boys out of the store, as he felt they were being too disorderly. Adam was never seen alive again and two weeks later, Adam's headless body was discovered. At that point in time, Adam was legally over "the age of reasoning" and no immediate alarms were raised (or offered) by the local police department. Adam had to be missing for more than 24 hours before they would even take a report. It's impossible to say whether today's missing child laws and procedures would have helped Adam back then but the point is, the Walsh's turned their personal tragedy, through tireless efforts lobbying and speaking, into what we now know today as the Natinal Center for Missing and Exploited Children.

The kidnapping and murder of Amber Hagerman from her home in Texas led to a national program called Amber Alert, named in her memory. The acronym stands for America's Missing: Broadcast Emergency Response. Today, when a child goes missing, an Amber Alert is issued nationwide, much in the same way as the Emergency Broadcast System works.

In all, these tragedies really did have to happen in order to prevent future ones. Hunter Kelly could have lived a normal life had his disease been caught at birth. Today, New York babies will be screened for this disease, giving them far better chances at life than Hunter had. That's Hunter's legacy to this world.

Adam Walsh's death brought forth new laws regarding the disappearance of children, as well as a national information network to keep more people looking for those missing children. Amber Hagerman's death brought forth the national alert system that is implemented rapidly after the disappearance of a child.

It took the death of a Hollywood leading man to bring AIDS to the forefront of a nation that was resisting acknowledgement of this deadly disease. Had medical organizations and the government acted more responsibly than they did, this disease would not have spread as badly as it did, contaminating the blood supply, and spreading through intravenous drug use, as well as sex. If you're ever of a mind to watch an excellent movie depicting how badly this problem was ignored, I would strongly recommend And the Band Played On.

Christopher Reeve's life and death had tremendous meaning to people throughout the world with spinal cord injuries. His strength was an inspiration, but his dedication to the research into treatments also contributed significantly to the treatment of spinal cord injuries. As an aside, how many people knew that Robin Williams paid the vast majority of Christopher Reeve's medical bills toward the end of his life?

My heart goes out to the Kelly and Reeve families today. May they realize the gifts that their losses have bestowed on humanity, and may they find happiness in having been blessed with their lost loved ones.

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