By Alicia Doyle

The Writer
Specializing in Good News
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Boy's rare disease inspires annual fundraising softball tournament

Photo by Jason Redmond/Ventura County Star: Andrew Harris hugs his favorite doctor, bone marrow transplant physician Ami Shah, as mom Christie Harris watches during a checkup at Childrens Hospital Los Angeles. He has hemophagocytic lymphohistiocytosis, a rare disorder of the immune system.

Playing to win

A 12-year-old Simi Valley boy with a rare immune system disorder has inspired a series of benefits to help find a cure for what is known as an "orphan disease" because it affects too few children to warrant federal research funds.

Considered a "miracle child" by his friends and family, Andrew Harris has been the catalyst to pull together community members in search of a cure for hemophagocytic lymphohistiocytosis, also known as HLH.

From Friday through Sunday, the community is invited to join Andrew's friends and family at Rancho Santa Susana Park in Simi Valley to raise funds for research. The event will open at 6:30 p.m. Friday with a home run derby, to be followed Saturday and Sunday by the 11th annual Play for a Cure, a round-robin, coed softball tournament held every year in honor of Andrew's June 30 birthday.

Money raised through these events will go to the Histiocytosis Association of America for research, education and support.

Andrew, who was born with HLH, has undergone chemotherapy and three bone marrow transplants, and in spite of numerous complications and a recent diagnosis of two different types of leukemia, "remains a happy young man who tests the excitement of the world around him every single day," said his mom, Christie Harris, who serves on the board of directors for the HAA.

Runaway protection

The rare disorder, which affects 1.2 out of every 1 million youths younger than 15, usually presents itself with fever and sometimes other symptoms of an infection. In many cases, a pathogen (virus or bacteria) can be identified. The human body contains many cells that fight infection, including T-cells and histiocytes. The activation of these cells causes an inflammatory reaction. Normally, when the pathogen has been eliminated, the inflammatory reaction is turned off, and the immune system returns to its steady state. Because of a defect in the immune system in patients like Andrew, however, the inflammatory reaction persists and causes the symptoms of HLH.

"Andrew is still recovering from his bone marrow transplant," Harris said.

"He cannot be in the sun, cannot play with other children under the age of 6, cannot be around anyone who is sick or been sick, cannot go in the dirt and has to be very careful of what he eats," she added.

Twenty years ago, the survival rate of children with HLH was close to zero, Harris said.

"Today, partially because of funds raised through this event, survival is between 50 and 60 percent," she said.

Important source of funds

Fundraisers like Play for a Cure are significant because there is little, if any, federal research funding for HLH, explained HAA President Jeffrey Toughill.

"The only way that research occurs is when friends and families pull together and raise funds," he said.

The Simi Valley event is a unique fundraiser "because the community has been behind this cause for so long. Sure, they are having fun at this event, but they are also saving children's lives."

Play for a Cure, started in 1998 by a group of friends and family members to celebrate Andrew's third birthday, has turned into a labor of love, said Dee Glynn of Simi Valley, the event's co-founder and director.

The tournament began with eight teams and raised a little more than $5,000. Last year, it drew 24 teams and raised more than $18,000, Glynn said.

'An orphan disease'

"Because histiocytosis affects less than 200,000 children per year, the federal government considers it an orphan disease," Glynn said.

The HAA and Play for a Cure, she said, "have been able to fund more than 100 research projects."

Meanwhile, Andrew continues to be a positive role model to everyone, his mom said.

"Andrew is both mentally and physically challenged, health-impaired, speech-delayed and has mild cerebral palsy, but despite all his daily challenges, does not view himself any different from everyone else," she said.

He is a role model because of his positive outlook on life, Toughill said.

"He enjoys the world around him, even though he has been so sick and spent so much time in the hospital. He is a happy, outgoing little boy who brings joy to everyone he meets."

A sixth-grader at Valley View Middle School who wants to be a monster-truck driver when he grows up, Andrew "can light up every room he enters with his personality, wit and sense of humor, and has been described as a little boy full of life, love and happiness," Glynn said. "Andrew has truly taught me some of life's greatest lessons: Don't take anything for granted. Never give up. And you can do anything if you try."

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