Tuesday, January 10, 2006
Today, I consider myself the lyingest man in the whole world!!!
ALS. Amyotrophic lateral sclerosis. Lou Gehrig's disease. A horrible disease that robs your ability to function while leaving your mind intact to contemplate your fate.
Enter Todd "Kelly" Smith, the 35 year old (now former) program director for WDJX-FM here in Louisville. In 2002, Todd Kelly revealed to the world that he had ALS. His touching story was told in a Courier Journal article reprinted below:
There are no rumpled angels or absent-minded uncles in this bittersweet story of a wonderful life all but doomed to a premature end.
Yet there is a Capra-esque quality to Todd Kelly's tale. Like bread cast on the waters, the good words and deeds that Kelly has spread since childhood are returning in his hours of need.
"I really do feel like George Bailey sometimes," said Kelly, program director at WDJX-FM (99.7).
After a lifetime of giving to others, Kelly, 32, has for the past 2-1/2 years been busy receiving aid and encouragement in his fight against amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.
In addition to the bedrock support of family, church and friends, Radio One, Kelly's employer since 1993, assured him that his job was safe, provided him with extra help and whipped up support for Louisville's first ALS benefit walk.
The staff and management of Phoenix Hill Tavern, Kelly's favorite nightspot for 13 years, worked without pay and recruited top local bands for a surprise benefit that raised $1,600 last fall. At Christmas, general manager Frankie Gray and crew gave Kelly a special electric massager to soothe his severe and nearly constant lower-back pain.
At Harvest Baptist Church in Fairdale, a fellow parishioner Kelly barely knew gave him a $4,500 wheelchair that belonged to her son, who died of ALS around the time Kelly was diagnosed.
Kelly also received a warm call and a handwritten letter from notoriously crusty comedian Jerry Lewis, namesake of the Muscular Dystrophy Association telethon, for which Kelly has worked as a volunteer since he was 7 years old.
Kelly talked with customer service manager Linda Suratt at WDJX.
Kelly, 32, who mixed a tape at the radio station, said he plans to outlive his doctor's predictions. "It can be done," he said. But Kelly's favorite gift was a $1 donation personally delivered to Radio One's Fourth Street headquarters by a preschool boy. His favorite salutation came from Patrick LeRoy, a 7-year-old muscular dystrophy patient who mailed a hand-drawn Christmas card that read, "You're going to get better!"
Even after 2-1/2 years, Kelly is as amazed as he is grateful: "So many people have done so much for me that it's truly unbelievable. Sometimes I even sit back and wonder, 'Are these people for real?' "
They are as real as Kelly's disease, a slow and certain killer with no cure and only one drug, Rilutek, approved by the Food and Drug Administration to impede its progress.
The concern and affection shown by friends and near-strangers alike are as authentic as the stabbing pains in Kelly's back and the dreadful fears that accompany every new twitch or twinge. ALS is a progressive and incurable neuromuscular disease that eventually paralyzes those it afflicts, leaving them unable to eat or breathe.
The people of Kelly's acquaintance, his personal Beaver Falls, are as real as the generous works he has done in a life well-spent, friends say. So well-spent that being struck two years ago with ALS seems like a bitter confirmation of the old saw that says no good deed goes unpunished.
"When we got the news," Kelly said, "I asked my mom, 'Did I do something wrong? Did I not help enough people? Why is this happening to me?' "
It's a question no one can answer, not his pastor nor his family nor even a close friend who also suffers from chronic disease.
When Kelly was diagnosed in June 2000, he was told he had three to five years to live. The shattering prognosis was delivered just weeks before Kelly's 30th birthday, 25 years before the average onset of ALS, which afflicts about one in 50,000 people in the United States.
"Of course I asked, 'Why me?' " said Kelly, a 1988 graduate of Pleasure Ridge Park High School. "I still ask that question - every day, in fact, even though I know there is no answer. I just have to accept it. I didn't ask for this. I can't change it. I'm getting better and better with it, but I'm not going to lie. It's pretty rough."
No one deserves a fatal affliction, but perhaps some are less deserving than others.
"This young man is a true angel among us," said Kelly's brother, Mark Kelly. "He has been a Big Brother for over five years, has been volunteering his time for (the MDA) for 25 years, and was the first person to take a chance and start" a local benefit walk for ALS.
Louisville's first "Walk to D'Feet ALS" in October owed its rousing success to Kelly's hard work and huge network of friends, co-workers and connections.
"I took it personally," said Kelly's boss, Dale Schaefer, general manager and vice president of marketing for Radio One Louisville. "I told Todd that we would go above and beyond just promoting the walk on radio.
"I sent out a personal letter to several hundred advertisers and said, 'I've got something affecting me and a member of my Radio One family, and I'm going to ask you to help out.' "
Schaefer's call and others were answered. The walk vastly exceeded expectations by raising more than $40,000.
It shouldn't have been a surprise. Kelly, in addition to being a legendary workhorse, is an old hand at raising money for charity. For 25 years, he has reported each Labor Day weekend to WAVE-TV as a volunteer for Lewis' annual muscular dystrophy telethon.
Twenty-three years after Kelly first lent a hand to MDA, he went to his doctor's office complaining of searing pain in his right hamstring. Kelly thought he'd simply overextended himself in workouts. He got severe cramps sometimes playing basketball.
These weren't cramps. They were the onset of a muscle-ravaging disease hauntingly similar to MD.
"It was a huge blow," he said. "It still is. I have dreams about it sometimes, about what might happen. I see myself in a wheelchair trying to go in somewhere and no matter what I do, I can't get in. It bothers me."
The diagnosis knocked Kelly, who is single, into a deep depression but also into the arms of a broad support network. His good friend, WAVE-TV broadcaster Dawne Gee, and his parents, Warren and Sybil Smith, were well-prepared to empathize.
Warren Smith has suffered since 1990 from Guillian-Barré Syndrome, an inflammatory nerve disorder that causes muscle weakness and sometimes paralysis. Gee was diagnosed seven years ago with lupus, a chronic but seldom fatal disease in which the immune system attacks the body's organs.
"My heart was really, really heavy for him," Gee said, "because when you're diagnosed with a chronic illness, I don't care how wise you are or how old you are, it's a smack in the face because you suddenly have to face your own mortality.
"I reminded Todd that you are not your disease, and that nobody can tell you how long you're going to live. That's left up to you, God and whatever technology might be out there."
One of Kelly's next calls was to Jack Alumbaugh, pastor at Harvest Baptist Church, Kelly's congregation for eight years. He asked Alumbaugh a sadly common question: Why did God let this to happen to me?
"It's an especially tough question to answer for someone Todd's age," Alumbaugh said. "At that age, there is a lot of bitterness and blaming. You just have to assure them that God is not against them or singling them out.
"People like Todd who have a good spiritual base, they just need somebody to listen to them. I've found that after you listen to them and encourage them, they become the folks who manage to get through all right. And they're usually the ones who live longer."
About half of all ALS sufferers die within 18 months of diagnosis, according to the ALS Survival Guide at www.lougehrigsdisease.net. Kelly's more generous prognosis reflected his relative youth and excellent fitness at the time.
He plans to outlive doctors' predictions.
"It can be done," Kelly said. "I know one woman who has made it for nine years. Then again, I've known some people who were diagnosed and passed away within a year."
Kelly can't help but wonder which fate lies in store for him. He recently suffered a scary headache that lasted for five days.
"Usually I take one Advil and it's gone," he said, "but I just can't seem to lick this one and it bothers me. I wonder."
Mostly, however, Kelly works and prays. And hopes, with the help of some encouraging words from Lewis.
"I'll never forget the way he ended the conversation," Kelly said. "He said, 'Todd, you keep your head up. You're going to be the one who wins the battle.'
"Maybe he'll be right."
Todd Kelly fought on bravely, as seen in the next story from the LEO.
It’s not easy being radio personality Todd Kelly. Three years after he was diagnosed with amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, the man his friends call Bear learned he has cancer. More specifically, secondary bone cancer, in both legs, which will more than likely lead to amputation.
That’s where the pity party ends — what Kelly wants is your money. And it is for a good cause.
This week, two benefits are set to raise money for Kelly’s ALS Foundation: Thanksgiving Eve at Fourth Street Live, and Thanksgiving night at Phoenix Hill Tavern. Proceeds go directly to his foundation, which funds research and supplies, including wheelchairs, walkers and canes for local people with ALS.
Kelly, 34, is promotions director at WDJX/WEGK and has worked for the Radio One channels for 13 years. Being on the radio and also out in the public gives him a bully pulpit for talking about ALS, a disease that affects nerve cells in the brain and spinal cord and leads to the loss of muscle control throughout the body, eventually causing total paralysis.
“I’m very fortunate to be in the business I’m in,” he told me during a casual interview at Highland Coffee on Fourth Street last week. Kelly detailed his health history as if I was a familiar friend. He spoke matter-of-factly and never lost his composure, his desire to get his story out and help others trumping any self-pity. “As soon as people found out (about the ALS), they started coming out of the woodwork to help out.”
Kelly started his ALS Foundation in 2002, a year after his initial diagnosis. “I didn’t want to make a spectacle out of it,” he says. “But about four to six months after I was diagnosed, people just found out. I didn’t want to be the poster child for ALS, but I wanted to do something to raise money.”
So far, Kelly says his Foundation has raised more than $150,000.
The cancer diagnosis came only a few months ago — after he went to the doctor complaining of difficulty breathing. The doctors found a malignant polyp behind his lungs, and a few days later, the polyp burst and the cancer spread directly to his right leg. A few weeks later, it was detected in his left leg. The cancer is so severe that his doctors issued an ultimatum: “They gave me from a Friday to a Monday to decide whether I wanted to be treated for cancer or ALS,” he explains. “And they also said I might lose my right leg in 10 months. In fact, they want to do the surgery as soon as possible, but I’m not ready for that yet.”
Kelly says finding new ways to raise money helps keep his spirits up. He still works out every day and enjoys spending time with his friends and family.
“I’ve got a long road ahead, but I have lots of support,” he says. “I want to do everything I can. Could I rest more? Probably. But who couldn’t? But if it’s going to defeat me, I want to leave a legacy for someone to continue on.”
The Gobble Trot on Thanksgiving Eve at Fourth Street Live is sort of like a pub crawl — featuring drink specials, T-shirts and a $500 raffle. Troy Thomas, marketing manager at Fourth Street Live, says the pairing of the event with Kelly’s Foundation was a natural.
“We’re always looking for ways to give back to the community,” he says. “Todd’s a great guy and a community leader. His foundation does amazing things for this community, and this was a great opportunity for us to give back to Todd.”
The “Togas, Turkeys, and Tunes for Todd” benefit at Phoenix Hill Tavern on Thanksgiving night features live music by Simon and Dave, The Funky Bluesters, Eclectic and the Trypp Band. Don your best toga and you could win a prize fit for Caesar.
Ben Rogers, who owns the Phoenix Hill Tavern, explained why he partnered with Kelly and his foundation. “It’s a wonderful show of love, affection and respect for Todd,” Rogers said in a press release. “Most people have a difficult time with one of these illnesses, let alone two. Todd has remained positive and optimistic, and continues to do what he can to help others.”
To contact Kelly or to learn more about his foundation, go to www.tkfoundation.org.
From the Todd's website (which is no longer running, but is archived here), we find the following about Todd's mission in life:
The mission of the Todd Kelly Foundation is to raise funds for ALS patients and research, providing financial resources to scientists, ALS centers and hospitals that are committed to finding cures or controls for each type of ALS.
In fulfilling its mission, The Todd Kelly Foundation:
Contributes financial support toward innovative research into the cause, diagnosis, control and cure for ALS.
Provides the highest standard of informative support and emotional encouragement to ALS patients and their families during their treatment and recovery process.
Provides services such as wheelchairs, walkers, etc. to ALS patients.
Makes ALS patients aware of success stories from ALS survivors, thus instilling hope and a belief that they can overcome their current condition.
For several years now, Todd has defied all odds, appearing to stay healthy despite cancer, ALS, and though he's too brave to admit it, the heartbreak of psoriasis.
What miracle cure has he found????? Money!!!!!! See the following story, courtesy of WAVE's own Ross Geller look alike, Eric Flack:
Ex-Radio Personality Under Scrutiny For Allegedly Faking ALS
By Eric Flack
(LOUISVILLE, Jan. 7th, 2005) -- In a stunning turn of events, radio personality Todd Kelly is accused of faking an illness, then using it to raise more than $100,000. So far, he has failed to produce medical proof that he actually suffers from ALS, commonly known as Lou Gehrig's Disease or accounted for the money he has raised. WAVE 3 Investigator Eric Flack has the details.
In 2001, Kelly said he was diagnosed with amyotrophic lateral sclerosis ALS, a rare disease of the nervous system that causes rapid and irreversible degeneration of the nerves that send signals to muscles.
Now, more than four years later, he has not shown any signs of the illness.
But in the past, he has described his suffering. "The pain I have now is like -- it's like someone is stabbing me."
And that, coupled with his inability to account for the thousands of dollars he's raised, has raised serious questions as to whether it's all been an elaborate hoax.
When we asked Kelly point blank if he could prove he has the disease, he told us, "Yes, if I need to, yes."
It now appears that things have progressed to the point where Kelly does indeed need to provide proof.
As we mentioned, Kelly, who, up until a few days ago, was an on-air personality at WDJX, first announced he had ALS, in 2001. There was an outpouring of support from the community.
But that was five years ago, but Kelly has yet to outwardly exhibit any of the symptoms of the devastating illness that took down one of the baseball's greatest legends.
Todd Adams with the Louisville MDA chapter, says that's unusual. He says ALS is "extremely progressive, and within five years, normally people are showing signs -- in wheelchairs, unable to speak, that sort of thing; possibly even death."
But more than four years later, Kelly has no trouble standing, walking or talking.
As for treatment, the MDA office in Louisville says Kelly has never registered.
Adams says that "normally, a diagnosis of ALS would set into motion a doctor referring that person to come to MDA to find out what sort of services that we do provide."
Kelly may have been a stranger to the MDA center, but he certainly was well-known in the community. Since his announcement, he has tirelessly raised money for his own foundation, and gotten plenty of help.
From places like the Phoenix Hill Tavern on Baxter Avenue, which held three benefits to raise money for Kelly. Frankie Rogers with the Tavern says everyone "just wanted to help him out. To make what time he had left, you know, the best that it could be."
Kelly also sends out emails and letters of his own, telling people he is dying, and asking for their financial support.
By Kelly's own estimate, he has raised between $100,000 to $150,000. With that much money raised, it's surprising that he had trouble paying the bill for his last fundraiser at the Olmstead on Frankfort Avenue in March 2005.
Brenda Bush with the Olmstead recalls "being told to meet him places to pick up the check. We'd get there, and he wasn't there, or would call right as we were getting there and say he got detained, or that he had gotten nervous and had forgotten the check."
Officials from the Olmstead say it took seven months and the involvement of the county attorney's office to get the $9,000 it was owed.
In response, Kelly says "that was due to sponsor problems. That was a sponsor, they was supposed to be helping pay for that, and didn't."
Never afraid of a camera before now, Kelly refused to meet us face to face, preferring instead to talk by phone. Part of the conversation went like this:
Because if you don't have what you say you have, you're the lowest of the low, you understand that?
Oh I understand.
That call took place Friday afternoon, and Kelly promised to call back in two hours with proof of his ALS, as well as an accounting of where the money went.
But Kelly never called back, and didn't answer our calls.
And that has given many of the people who have helped him a sick feeling of their own.
As Bush puts it, "life-threatening diseases and people suffering from them are tragic enough, but for somebody to use it for their own personal gain is just unforgivable."
Kelly started the Todd Kelly Foundation to raise money and awareness a couple months after he publicly announced having the disease. In the past, he's said the money raised has gone to fund other fundraisers, as well as buying beds and wheelchairs for other people who suffer from ALS.
But Kelly has yet to produce any names of people or groups he's donated to.
Three years after his ALS announcement, Kelly said he had cancer as well -- another unsubstantiated claim.
So we have made Kelly an offer to arrange and pay for tests that will prove once and for all if he has any of the illnesses he claims to have.
We'll let you know whether or not he takes us up on our offer.
Kelly resigned his position at WDJX earlier this week, but he says it was not because of these accusations but for personal reasons.
What kind of a sick weasel not only fakes a disease, but then uses it for financial gain? And why ALS, a fatal disease that robs people of their lives in the most horrible way possible. All of the people who have rallied around him, raised money for him, and prayed and cared about him have been robbed, both financially and spiritually.
Perhaps a few hundred thousand hours of community service cleaning dirty bedpans at hospitals? Or perhaps garnishing his wages from now until he gets the fatal disease he deserves?
I've only known one person with ALS, a young mother who found out she had the disease shortly after giving birth to her second child. She spent her remaing time on earth legitimately raising funds for the disease, even as her physical capabilities disappeared. Did her family offer support to Mr. Kelly? How about the others in the area with ALS or other Muscular Dystrophy? And didn't this idiot know he'd be caught?
Words cannot express how disgusting I find this. Since he's not been forthcoming with supporting documentation, and his stories are all very short on supporting facts, I have to believe it was all a lie. If it is, there is a special place in hell for this sicko.
Posted by Rob at 7:07 PM