`How is this kid still alive?’

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The Times, originally uploaded by rsdscrpsnews.

`How is this kid still alive?’
Sunday, January 01, 2006
Staff Writer

There were times when Danny DeFilippo lay in bed, wishing himself dead.

Constant pain will do that to a person.

But such thoughts have slowly melted away in the two years since the Route 29 car crash that claimed the lives of his four best friends. DeFilippo still wrestles with the burden of a fate that left him the lone survivor.

Physically, he has overcome two broken legs and a torn aorta that required 25 surgeries those scary first weeks, only then to be diagnosed with a rare neurological disorder that left him in constant, arthritis-like pain.

Mentally, he refuses to travel Route 29, never mind venturing near KatManDu, the Trenton nightclub where he and his friends had been drinking before heading home that rain-soaked night in May 2003.

It all came rushing back when DeFilippo heard about another crash along Route 29 that took four lives again – this time young women – in November.

“Honest to God, there’s something about that pavement with the sections of concrete when you hit the cracks and the dut-dut, dut-dut,” DeFilippo said of Route 29, which has had some sections repaved in the past two years. “I can hear it and I can see that pavement.”

DeFilippo’s raspy voice, the remnant of a once-broken vocal cord, rises when he talks about drinking and driving, about friends and family members who still drink and drive despite knowing his story and the story of his friends.

“I have other friends that drive drunk all the time, still do,” DeFilippo, 25, said in his first interview since the crash. “It doesn’t make any sense to me. I get so infuriated by it, like, you saw me first-hand go through this.”

The grief and the physical pain over the past two years has become a wall separating so many people he once thought close, DeFilippo said at the Langhorne, Pa., town house he shares with his fiancee, Margie.

“I lost all kinds of people because they don’t want to be around you when you’re suffering,” he said. “They want to be around happy, fun people.”

DeFilippo was told by doctors that the ripped aorta he suffered usually killed people within seven seconds. Somehow, he lasted seven hours before his heart’s main outward-pumping valve was patched by doctors at Hahnemann Hospital in Philadelphia.

“They opened me up and saw my injuries and said, `How is this kid still alive?’ ” DeFilippo said. “My mother said that after the doctors came out (of the surgery) they were literally cheering, giving high-fives. This is what they went to medical school for.”

The blood loss, the emergency surgeries in the days following the crash and his bedridden life over the next few months dropped DeFilippo to 80 pounds.

Back up to 145 now, he still is skinny, his chest shallow with a long scar reaching from the left side to the bottom of his left shoulder blade – a ragged, upward-curved reminder.

“That first surgery, on my aorta, lasted 12 hours,” he said. The stay in the intensive care unit lasted six weeks, but more pain was to come.

A week after DeFilippo was released from ICU and admitted to a convalescence ward at Hahnemann, his father, Louis, died after a two-year battle with cancer.

“I was in the hospital downstairs,” DeFilippo said. “My father was in the hospital on the second floor.”

The death of his father meant the loss of almost all the male role models he had growing up in Ewing.

“That was every male influence I had,” DeFilippo said. “Besides a couple others, my father raised me, and I grew up with these kids. And all that was taken away from me.”

— — —

Five young men who had been friends since they played on the same youth soccer teams in Ewing gathered on a night in May 2003 to enjoy a rare opportunity to hang out together.

The group had been splintered since the beginning of high school, when Ryan Fesko and Stephen Elliot enrolled at The Pennington School, DeFilippo and Joseph Bellardo III enrolled at Notre Dame High School and Leonard Pataki went to Ewing High School.

The boys eventually drifted further apart in college, when DeFilippo attended LaSalle, Fesko went to The College of New Jersey and Elliot went on to Rutgers University.

But it was nights like the one in May that they all looked forward to, coming back to the old Ewing-Trenton area haunts to see old friends. KatManDu was one of their favorites.

When the night ended in a violent car wreck, it seemingly ripped apart an entire community in which the five friends had become so entwined over the years.

“We were just going out (that night). We celebrated life every night and that’s the kind of people we were,” DeFilippo said. “We didn’t necessarily go out and party and drink. We were good spirits. We went out and saw people from high school and had fun.”

DeFilippo said he and Bellardo spent the night at the club sitting at a table, having a couple of beers and talking about old times and the condition of DeFilippo’s father.

DeFilippo said it was a terrible combination of circumstances that led to the horrible end of an otherwise joyous night.

“It’s terrible because it happened to good kids,” DeFilippo said of the crash.

— — —

Around every turn, DeFilippo has been tested.

The most difficult challenge came not in the months spent in the ICU or when he was told his father died but in the very days when he seemed just about ready to get back into the daily grind of normal life.

“I was recovering from my initial injuries, and by December (2003) I was running on a treadmill and back to work when the RSD (reflexive sympathetic dystrophy) happened,” he said. “I had no idea what it was. That’s the problem with the disorder.”

RSD is a rare disease that affects the nervous system. It afflicts more than 200,000 Americans with a constant pain that can become unbearable.

“I was suffering,” he said. “I had 24-hour pain, which is literally torture. When I was real sick, I couldn’t get out of bed. There’s still days when I can’t get out of bed I’m in so much pain. I would go unconscious from the pain. I would throw up from the pain.”

No treatment in the United States was able to significantly dull the daily agony of RSD, DeFilippo said, so he decided to attempt to raise enough money for a trip to Germany, where an experimental treatment is performed.

He and his family held a golf tournament in the summer of 2004 to raise money for the trip and procedure, which included a dangerous five-day induced coma during which the patient is pumped with a large amount of the powerful anesthetic ketamine.

The procedure remains banned in the United States, where federal regulations prohibit any treatments that induce comas for longer than two days.

The golf tournament raised $55,000, and its success has fueled DeFilippo’s desire to help others with the painful disorder, he said, pointing to his organization, the Daniel DeFilippo RSD Foundation.

Another fund raiser, for a young Philadelphia mother, is set for next April at the Mercer Oaks Golf Course in Ewing.

The success of the treatment has eased his pain tremendously, though arthritis- like aches, sometimes severe, do continue to throb in his left leg throughout the day.

But life is better since the treatment, he said, so much so that he is starting another accounting job.

“I’m going to try working part time again,” DeFilippo said, adding that he likely would begin picking up some shifts in the new year.

— — —

Despite his hardships, DeFilippo has made a solemn oath to himself to dwell on the positives of life. “Every hour, every minute I have without pain is golden to me,” he said.

And there are many things that have given him reason for hope.

DeFilippo met a young woman last year who could identify with his tragedy, as hard as that might be.

His fiancee, Margie Pajak, 24, also was in a terrible car crash, DeFilippo said, suffering a broken back and legs and the loss of a couple of her best friends.

The two met when Pajak, who works for New Jersey Manufacturers Insurance Co. in Ewing, saw a story about DeFilippo in The Times several months after the crash.

“She called me up, interested in the foundation I was starting,” he said. He asked her to marry him four months ago. They will be wed in October.

DeFilippo also has found a strong sense of pride in speaking to youngsters, as well as adults, about the disastrous combination of drinking and driving.

In the past two years, he has spoken to students at Ewing and Notre Dame high schools, elementary school children in Philadelphia and before an audience of 3,000 New Jersey police officers at a PBA convention in Atlantic City.

“I’m out to help people now,” DeFilippo said. “And it’s something I am thinking that I could do one day full time: be a motivational speaker. I think I could do that.”

For now, DeFilippo walks gingerly around his suburban home in slippers, keeping a constant fire burning “because it helps the pain in my body.” He is taking it literally one step at a time.

“I’m going to have struggles to deal with forever because of this accident,” DeFilippo said. “I’m always going to have pain. I’m always going to be reminded.”

NOTE: Contact Brian X. McCrone at bmccrone@njtimes.com or (609) 989-5716.

Original Article @ http://www.nj.com/search/index.ssf?/base/news-0/113610655554530.xml?times?nxt&coll=5&thispage=6

Part 2

A long way for treatment
Sunday, January 01, 2006
Staff Writer

For an estimated 200,000 Americans, reflexive sympathetic dystrophy (RSD) is so debilitating that they cannot function, losing the ability to button shirts, comb their hair or maintain a job.

For Danny DeFilippo, the soft breeze from a ceiling fan evoked such pain in his leg that he would often pass out or throw up from it.

“It often originates from broken bones or even sprains,” said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association. “Eighty percent of people who develop this as adults don’t get better.”

More than 40 percent of RSD patients polled recently said they had considered suicide at times as an escape from the intense pain.

Any injury related to the nervous system can spark RSD. Bone breaks are the most common causes.

DeFilippo’s RSD likely originated from the broken left leg he suffered in the May 2003 car crash. Symptoms became apparent several months later as he was healing from the multiple fractures in both legs. He was diagnosed after his doctor at Hahnemann consulted one of the leading neurologists in the field, Dr. Robert Swartzmann, who also practices at the Philadelphia hospital.

He tried everything to ease the creeping pain that eventually spread from his leg and took over his whole body.

“I put a heating pad on it. I put the fire on in the fireplace. My fiancee will put oil on me,” DeFilippo said recently. “I have days, especially before the snowstorm like I’m fearing tomorrow night, I feel it so much. Then there’s days like this when I feel good, I can walk around.”

After months of suffering while doctors said there was no complete cure yet available in the United States, DeFilippo decided last year to take a chance on an experimental treatment in Germany.

In December 2004, DeFilippo spent five days in an induced coma while an extremely large amount of a strong anesthetic called ketamine was constantly circulated through his system.

Since then, DeFilippo said, he has felt much less pain, though some remains.

He continues treatment in the Uniited States, receiving “booster” treatments once every couple months to continue to keep the pain minimal.

But Broatch said it is still too early to begin promoting the experimental, and dangerous, German procedure.

“It’s not a cure and when you come back you need these booster treatments. The high-dose coma is dangerous, it’s done in an ICU,” Broatch said.

For more information on his foundation’s next fund raiser, scheduled for April 10 at Mercer Oaks Golf Course in Ewing, contact Danny DeFilippo at (267) 229-9430 or (215) 880-1154.

Original Article @ http://www.nj.com/search/index.ssf?/base/news-3/113610656954530.xml?times?ngx&coll=5#continue


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