PSP patient has to go out of US for hope

[rayilynlee <rayilynlee@xxxxxxx>]

            Mell's quest to save wife led to scientist

            (Chicago Tribune (KRT) Via Thomson Dialog NewsEdge) Dec. 30--There 
was no guarantee of seeing him, let alone that South Korean stem cell 
researcher Hwang Woo Suk could do anything to save the alderman's wife.

            Hope alone pushed Richard Mell, his wife's medical records in hand, 
onto an early flight to Houston, where Hwang received an award in June for 
achievements revealed this week to be lies.

            Without a plan, the Northwest Side alderman found Hwang in a hotel 
lobby. They talked for 15 minutes, and the South Korean doctor pledged to seek 
a way to re-create the brain cells savaged by Marge Mell's progressive 
supranuclear palsy.

            "I started bawling in front of him, because I was so excited by the 
possibility," Ald. Mell (33rd) said Thursday, reluctant to denounce Hwang even 
as the scientist's reputation fell apart and the Mells turned to other stem 
cell hopes in Israel.



            The Mell family's story shows the raw emotions at stake in the 
Hwang saga and in the larger quest to develop stem cell therapies that might 
find a way around the word "incurable."

            Mell flew to Houston at the height of the South Korean scientist's 
popularity, on a day filled with standing ovations from other scientists. 
Already, Mell explained, "this man was God in Korea."

            Who better to ask for a miracle?

            But in recent weeks Hwang's achievements have been unraveling. On 
Thursday, investigators with Seoul National University said they concluded that 
his claims of developing stem cell lines from cloned human embryos were 
fraudulent. Investigations into his other breakthroughs continue.

            The Mells have been married 42 years, the last two of which brought 
the first mysterious signs of degeneration in Marge Mell's brain. Her diagnosis 
with progressive supranuclear palsy was confirmed during that time.

            It was a chilling conclusion.

            "There is currently no effective medication for PSP," says the Web 
site for the Society for Progressive Supranuclear Palsy. "Those affected 
usually survive six to 10 years after the initial symptom occurs."

            A disease's fatal march

            Loss of certain brain cells makes movements slower. The sufferer 
loses balance and control while walking, then has trouble swallowing, speaking 
and with eye movement. The final years are spent in a wheelchair or bedridden.

            "I met this woman in 1962. The first time I saw her I fell in love 
with her," said Mell, a political dealmaker of high order even in the 
rough-and-tumble world of Chicago politics. "I've helped everybody, but I 
couldn't help her. It's killing me."

            The couple's hunt to explain Marge's symptoms took them to the 
University of Illinois at Chicago Hospital, the University of Michigan, Rush 
University Medical Center and Northwestern Memorial Hospital.

            Diagnosis in hand, they consulted with the Mayo Clinic, with Hwang, 
with Dr. Shimon Slavin of Hadassah University Hospital in Jerusalem.

            Mell said he is enraged that he would have to seek help on foreign 
shores. Embryonic stem cell lines, considered by many scientists to be the most 
promising, come from human embryos. Because of that, research on stem cells has 
been limited in the United States after critics have raised ethical objections.

            "We're lucky we have the money to do this," Mell said. "We've got a 
police officer in our ward whose daughter has [multiple sclerosis], but he 
can't afford to go out of the country."

            Earlier this month, the Mells traveled to Israel, where Slavin 
injected into Marge Mell's spine 130 million stem cells cultured from her own 
bone marrow.

            "We don't know what the outcome is going to be," Mell said. "It's 
too early to tell."

            The PSP society lists several promising areas of study. Officially, 
stem cells are not among them. But like many other families dealing with 
terminal illnesses, Mell said he was determined early on to look for answers in 
new areas.

            "Stem cells were always in the back of my mind," he said.

            Hwang 'sat down right with us'

            Mell learned of Hwang's work in June and thought he might fly to 
Seoul to consult with him. A check online showed Hwang would be in Houston to 
receive an award at Baylor College of Medicine the next day--Saturday, June 11.

            Paul Park, a Korean Chicagoan, volunteered to translate if needed, 
and the men boarded an early morning Southwest Airlines flight to Houston. They 
found Hwang in their hotel lobby minutes after checking in.

            "He came and sat down right with us," Mell said. "He explained to 
me that he would do everything he possibly could. He was spectacular. And now 
we found out the fact that he fabricated his results. After meeting him, it's 
hard to believe that he would have done that."

            On Nov. 14, Hwang sent a letter to the alderman as chairman of the 
World Stem Cell Hub at Seoul National University Hospital. It was a month after 
the hub opened, and just after his chief American collaborator quit amid 
concerns over Hwang's ethics.

            "We are extremely grateful that so many of you have shown interest 
on our work and all the encouragement given to us," Hwang wrote to Mell.

            "Countless failure and suffering is part of research, but we will 
give our best to overcome these challenges for the love of human life," the 
letter concluded. "We will cherish your good will."

            jjanega@xxxxxxxxxxx

            Tribune news services contributed to this report 

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