Searching for help

Since early November of 2004, when he was diagnosed with a rare auto-immune disease, David Rubenstein, along with his family and friends, has struggled to understand his condition, find a team of doctors who could help him and raise money for a procedure that could save his life.

There are no guarantees, Rubenstein said during a phone interview from his Massachusetts home, but he and his family have hope.

"There's only hope; hope and energy," said Jayme Rubenstein, Rubenstein's son and a 2005 graduate of Syracuse University.

Working as a broadcast journalist in New Mexico, Jayme Rubenstein returned to his alma mater this past weekend to visit the friends he made during his four years in the SU Marching Band and the Sour Citrus Society.

While Jayme Rubenstein attended the homecoming festivities like other alumni this weekend, there is a sense of urgency underlying everything he does and will do during the next several weeks.

His family, a loyal group of friends and many on the SU campus, are working to raise about $140,000 by early November so that his father can undergo a stem cell transplant procedure that could save his life. The procedure is not approved by the Food and Drug Administration and, consequently, is not covered by health insurance. Jayme started a Facebook group to help raise money for his dad, and several fraternities and sororities have joined the effort since.

A Diagnosis

Jayme Rubenstein said he and his father have always been very close.

Rubenstein would always attend his son's soccer games and even coached his little league team.

"He was just the dad that everyone wants," Jayme Rubenstein said. "He was there."

A "home-computer doctor," David is well-known in the community, Jayme Rubenstein said. He started his computer business doing pro-bono work at retirement homes. He helped the elderly learn to use email so they could keep in touch with their families.

"Computers are what he knows," Jayme Rubenstein said. "They're what he does."

An active adult, Rubenstein ran on a treadmill and swam in a lap pool every day at a local YMCA, he said.

"I like to play games," he said, laughing to himself.

In the period of a week, Rubenstein said he felt his stamina begin to go.

He went from being able to run for 45 minutes to barely being able to complete a 20 minute jog and from swimming one mile a day to only a few laps. His hands began to swell so much that he couldn't make a fist, he said.

Rubenstein and his wife Robbi went to their doctor who ran some simple blood tests. After finding unusual results, the doctor sent him to a rheumatologist at the University of Massachusetts Medical Hospital who told him he had scleroderma.

"At that time my diagnosis wasn't detailed," Rubenstein said.

After more testing, doctors concluded that he suffered from diffuse systemic scleroderma, an auto-immune disease which affects the connective tissue in the body, produces an excess of collagen in the skin and severely restricts lung capacity.

There are only about 150,000 reported cases of the disease in the United States, but estimates say there are probably 150,000 more undiagnosed cases, Rubenstein said. Only about 20 percent of cases involve men.

There is no cure for the disease and most treatments are in the trial stages, Rubenstein said. His doctors did not give him a clear prognosis.

"Doctors will never tell you if you're dying, even if you are," he said.

Rubenstein said he went into a state of denial at first. He didn't feel like he was dying and so he didn't believe it.

"The thing with this disease is it is progressive," he said. "After a month you realize you're coughing a little more than you did before."

Three months ago, for example, David said he could stand up in the shower. Today, he needs a shower seat.

Coping

Rubenstein's condition began to take its toll on the Rubenstein family.

Until three years ago, almost all people with this type of scleroderma died, Jayme Rubenstein said.

"Without treatment, within two years I'll easily be on oxygen 24/7 and hardly be able to leave the house," Rubenstein said. "Death will soon follow."

This reality was not easy for Rubenstein's children.

"He would work no matter how he felt," said Emily Rubenstein, his 20-year-old daughter. "He actually had to take days off from his job. And when my dad has to take days off, you know something is wrong."

After dropping out of college during her freshmen year, Emily Rubenstein moved back in with her parents for several months.

"It was a shock for me to realize how sick he really was," she said. "All you can hear in my house is coughing and there's nothing that you can do. It's so painful to hear."

"There were times when I cried," Jayme Rubenstein said. "I would say out loud to myself, 'He's not going to meet my wife, he's not going to meet my kids.'"

Luckily, Jayme Rubenstein said, his family was very open and honest about Rubenstein's disease.

"I had the sex talk with my parents when I was 8," Jayme Rubenstein said. "I've always had an open relationship with my dad. So, when it was time to talk about death, we talked about death."

For Rubenstein, the thought of leaving his children was the most difficult part.

"My wife and I like to say that our kids are the two most beautiful people we've ever met in our lives and it's a hard thing to think that you're going to lose somebody that close to you," Rubenstein said.

The Search for Treatment

Almost as soon as he was diagnosed with scleroderma in November of 2004, Rubenstein began to look for treatment options.

His first stop was Boston University, a major research center for scleroderma. After months of driving into the city for treatment, Rubenstein and his wife realized they needed to look somewhere else.