Dad leads fight against fatal disease

Chuck Mohan spent the last five years of his daughter's short life trying to find out what was killing her.

Gina was 10 when she started developing the progressive, seizure-like symptoms that led to her death in January 1995.

Less than a year before that, Chuck and his wife, Adrienne, had finally received a diagnosis, after visiting nearly 40 physicians across the country, as well as e-mailing countless more.

"We learned very early on that all you treated were the symptoms," said Mohan, a Monroeville resident who owns and operates the family restaurant of the same name in Penn Hills. "I was appalled that doctors were unfamiliar with this disease."

The lack of a cure and even readily available information made it even more difficult for Mohan, a former industrial arts teacher at Plum High School and Monroeville councilman.

"I was always used to fixing things, being self-employed," Mohan said. "And suddenly they were telling me 'there's no cure for this.' I thought, 'there's got to be more information out there.' So I started working on my laptop computer."

Experts now believe that Gina Mohan was afflicted with one of more than 200 diseases that now fall under the auspices of the United Mitochondrial Disease Foundation, the nonprofit organization that originated in the Mohans' basement five years ago.

"We found that there were a lot of splinter groups out there, and agreed that it was time to pull all of them together under one umbrella organization," Mohan said.

With a working slogan of "Redefining Hope," Mohan still chairs the UMDF, which now operates out of the Shirley Kidd office building in Plum, and plans to more than double its fund-raising efforts to $250,000 in 2002.

"In the last five years, the international medical community has been able to find where the disease originates, which is inside the cells, in the mitochondria where energy is transferred," said Georgette H. Demes, UMDF's director of development and programs.

It's no coincidence that the organ in the human body that requires the most energy is the brain, which would account for the stroke-like symptoms that often appear.

Doctors in the past have attempted to dismiss mitochondrial disorders under better-known diseases such as cerebral palsy and multiple sclerosis.

But a separate diagnosis is needed. In addition to strains such as Leigh's Disease and COX disorder, there may be a connection between Sudden Infant Death Syndrome and mitochondrial diseases.

"We now know that mitochondrial disease affects 30,000 to 50,000 people in this country, that it's misdiagnosed and unrecognized," Demes said. "And it's a killer -- especially in children."

Those children are generally younger than Gina was when she became stricken with what her parents initially thought was a bout with the flu.

"In our case, our daughter had 10 years of a normal life," Mohan said. "But another thing that made it terrible was that we went another 17 months straight without an episode."

In the summer of 1994, doctors actually were tapering off Gina's medicine to control her twitches. She and her father were enjoying two of their favorite pastimes: riding the rides at Kennywood and eating ice cream.

That's when she complained of being tired, and Mohan noticed a tremor in her leg.

"From there, she took a very fast downward spiral," Mohan recalled. "We walked into the hospital holding her hand, and 90 days later, we pushed her out in a wheelchair."

Mohan's search for a diagnosis became more intense. He had basically been handed a newsletter circulated by the COX Foundation, and he continued to work to bring all of the separate organizations together, as he put it, "to turn the focus around into a hub."

While working late into the night, Mohan said he would wheel Gina in her hospital bed from the family's living room into his study so she could type some of the keys on his computer.

"But after she died, I just wanted to find somebody to take over," Mohan said. "There was a time there where I just wanted to wrap everything up, put it in a box and give it to the next guy."

At the same time, the advances in the field were becoming noticeable. Somehow, one of the organization's newsletters made its way to a laboratory in Moscow.

By now, the Mohans were receiving 200 to 250 phone calls a month, from doctors with an occasional breakthrough and from parents with a need to talk. And the donations were also coming in.

So they stuck with it. After next year's UMDF Symposium in Dallas - where 600 people are expected to attend - Pittsburgh will be the host of the conference in 2003. The organization has also established a fund-raising goal of more than $5 million in the next five years.

"I've seen the strides we've made and I still see the potential that's there," Mohan said. "It's more than where we've come from - it's where we still have to go."

He feels that in 15 years, Gina had an impact and a legacy that will live on.

"We were victims of circumstance," Mohan said. "But we viewed the circumstance as a beginning and not an end."