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.

"Even at an epicenter of research they weren't able to do anything with what they had," Rubenstein said. "My wife and I decided we could no longer drive to Boston to see people who were just as frustrated with the disease as we were."

After researching medical studies at Duke University and Northwestern University, Rubenstein came across a Web site called allmystemcells.com. The site was created by a woman like Rubenstein who has systemic scleroderma. Like him, her lung capacity fell to less than 45 percent.

After undergoing an experimental stem cell and bone marrow transplant procedure, her lung capacity increased to 75 percent and she now walks more than a mile a day.

The Rubensteins quickly contacted the doctor who performed the procedure - which involves removing Rubenstein's stem cells, killing his immune system with high doses of toxins and re-inserting the stem cells to re-build his immune system - and made a consultation.

Rubenstein said he was the perfect candidate for the procedure and he scheduled it for Nov. 6.

"Right now for my dad, walking from one room to another is excruciating," Emily Rubenstein said. "I can't wait to be able to play basketball with him again."

Fundraising and New Hope

Since the procedure is not FDA-approved, the Rubensteins' health insurance provider will not pay for it, Rubenstein said.

The procedure itself will cost about $90,000 and the Rubensteins will need an additional $50,000 for his recovery.

For his family, there is no other option but to raise the money and save Rubenstein.

"When we got the nix from the insurance company, we said, 'OK, how can we do this?' It's simply a matter of life and death," Jayme Rubenstein said.

During the last several months, the Rubensteins have mobilized a fundraising campaign, which began in their hometown of Westboro, Mass., and has expanded to the SU campus and beyond.

They are working with the National Foundation for Transplants, a non-profit fundraising group that assists families such as the Rubensteins who cannot afford life-saving procedures.

"This is an amount of money that we just can't access on our own," Rubenstein said. "The hardest thing about it is to go out and ask all these people you know to give large amounts of money."

The fundraising started when Rubenstein sent out a late-night e-mail asking for help from friends and relatives. When nobody responded by midnight, just two hours after the e-mail was sent, he said he began to get nervous.

"You start to wonder if people care," Rubenstein said.

But by the next morning, Rubenstein's inbox was full of e-mails from friends who said simply, "Tell me what you need."

A Web site, helpdave.org, and a Facebook group called "Save David Rubenstein's Life" have since been created. Members can donate by mail, by phone or through a Pay Pal account set up through NFT.

So far, Emily Rubenstein said, they have raised about $90,000. While they have a long way to go before reaching their goal, Jayme Rubenstein said he is positive.

"With everybody's help, I really think we can blow by our mark," he said.

Students at SU have become involved in the fundraising effort.

Greg Maistros, a junior music education major and Emily Rubenstein's childhood friend, is raising money through Kappa Kappa Psi, Jayme Rubenstein's fraternity.

"Jayme's dad is one of the nicest people I know," Maistros said. "My father passed away when I was a senior in high school and the Rubensteins were there for me."

This past weekend, members of Kappa Kappa Psi, the National Honorary Band Fraternity, passed out flyers before the Homecoming game on the quad. The fraternity is also working with the SU Marching Band and the sisters of Tau Beta Sigma.

The Rubensteins said they are overwhelmed by the support they have received.

"I don't have a cynical view of humankind, and after this I think I can prove that civilization is actually moving forward and not backward," Rubenstein said.

"If my father died tomorrow, I would know in my heart that we did everything we could, and to that end we would be satisfied," Jayme Rubenstein said.