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  2001 BOSTON MARATHON

Run for the money

Board member, former patient join to raise funds for Children's

By Jackie Cowin, Globe Staff Correspondent, 4/8/2001

en-year-old Cali Papalia doesn't remember much about either of the bouts she had with a crippling blood disease early in her young life.

But her parents, Gene and Linda, do. And when they remember how Cali's body swelled up - her eyes bloodshot and her skin so sensitive that she couldn't stand to be touched - they find it hard to believe that a week from tomorrow she will run the final mile of the Boston Marathon.

''The doctors stressed over and over, and they still stress, how lucky we are she's still here,'' said Cali's mother, Linda.

Cali, who lives in Marlborough, will run the final stretch, from Kenmore Square to the finish line of the Marathon, with Needham resident Robert Sherman, who is running the race in Papalia's honor to raise money for Children's Hospital. Both are members of the Children's Hospital Team, which pairs runners with patients in an annual fund-raising effort.

The Children's Hospital Team is one of 15 charities given 1,000 entry numbers by the Boston Athletic Association to use for fund-raising. Last year, runners raised $3 million for charity.

Most children on the hospital's team do not take part in the Marathon; the idea for Cali to do it came from Sherman, who suggested it after Cali told him she had run a mile in school when the two met in January.

While Cali - a bright-eyed, pony-tailed fifth-grader at Marlborough Middle School - said she is excited about running in the event that she has only seen on TV, Sherman is looking forward to the event just as much.

''I've been picturing it for three months, making the turn onto Boylston Street with Cali, running toward the finish line with the crowd going crazy,'' said Sherman, 47. ''It's going to be an incredible experience for us both.''

When she was 18 months old, Cali was stricken with Kawasaki disease, an illness with no known cause, which was once very rare but has become more common in the past decade. The disease itself is rarely fatal, but it seriously inflames or weakens blood vessels, making its victims vulnerable to aneurisms or other forms of heart disease. Its symptoms include very high fever, rashes, and joint pain.

Since the disease was little-known when Cali fell ill, it went undiagnosed for 18 months, until the Papalias brought her to Children's, where doctors were able to diagnose and treat her.

''It took over her whole body. Her body was swollen, her eyes were red, and we couldn't touch her because it hurt,'' Linda Papalia said. ''It was devastating, and nobody had any answers for us.''

When she was 4 years old, Cali developed a recurrence of the disease (the disease recurs in 1 to 5 percent of children), suffering from a swollen tongue, joint pain, and sensitivity to noise.

This time, the Papalias went straight to Children's Hospital, where the staff - including Drs. Jane Newberger and Robert Sundell and nurse Annette Baker - had her on the road to recovery within days.

''If she wasn't in Boston,'' Gene Papalia said, ''I don't think she would have had a chance.''

While Cali still occasionally suffers joint pain and visits with doctors regularly, she is not in danger of developing a serious heart ailment, and the disease does not play a large role in her life. She competes in soccer, basketball, and gymnastics, and her parents rarely mention the disease to her coaches for fear of causing unnecessary worry.

''We don't want it to stigmatize her,'' Gene Papalia said. ''She can run around out there like all the other kids.''

Cali, who has a 13-year-old brother, Matt, is so healthy and energetic these days that Sherman jokes she may beat him to the finish line.

''Our biggest worry is that she won't run slowly enough for me,'' he said.

Sherman, a Boston attorney who took up marathons in his mid-40s, is on the advisory board for the Children's Hospital Team and has run Boston to raise money for the hospital three times. This is the first time he is partnered with a patient.

When he called the Papalias in November, to introduce himself and explain the Children's Hospital Team, he naturally made quite an impression. ''We couldn't believe it,'' Linda Papalia said. ''I just thought it was amazing and wonderful that he is doing this in her honor.''

Raising money by running the Marathon has been very important to Sherman, whose own two children were also treated at Children's for minor illnesses. But running with Cali makes this year's race, and the cause behind it, more meaningful. ''It makes it real,'' said Sherman, who finished the Marathon in four hours last year. ''When you have the opportunity to do this with a family and a child who have gone through Children's, it brings it all home.''

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