ANAHEIM : Family Seeks Funds for Boy’s Treatment

Marcia and Edward Harris are typical doting grandparents, happy to do anything to make their grandchild’s life better.

After their grandson Jordan was born two years ago, the Harrises, who live in Anaheim, figured he needed to live in a house with a yard in a nice neighborhood. So they bought one for their daughter, Noelle McNeill, and her husband to rent from them in their hometown of Fort Collins, Colo.

But Jordan’s latest need requires something even more substantial than a house. The little boy suffers from tyrosenemia type 1, a rare liver condition that prevents the body from processing protein. Left unchecked, the disease almost always leads to liver cancer and death. The only cure for the disease is a liver transplant.

The disease was diagnosed in January, after Jordan began losing weight at an alarming pace. When the diagnosis was made, the family went into shock, Marcia Harris said. Soon, frustration developed because of the distance between the grandparents and their grandson.

“It has been awful for my parents,” Noelle McNeill said in a telephone interview. “I think the reason they have done so much for us is because they aren’t here to see him.”

Although Jason McNeill, Jordan’s father, has medical insurance through his job at a produce company, the cost of a transplant is not covered. Medicaid is expected to pay for the surgery, but the family must still raise $250,000 to pay for Jordan’s hospital stay and the follow-up care and medication he will need.

Living so far away from her daughter has been nearly unbearable, Marcia Harris said. To compensate, the grandparents have focused on raising money. In July, the Harrises began placing canisters in several businesses in Placentia and Yorba Linda.

On Halloween, Marcia Harris spent four hours in an angel costume at a restaurant in Placentia, hoping to attract attention to Jason’s plight. Her efforts raised about $70.

From the six canisters placed in businesses, the Harrises have raised about $3,000. Combined with other fund-raising efforts, the total amount raised for Jason’s transplant is $12,000.

But raising the money is only half the battle, Marcia Harris said. The family is in a race against time to get a liver for the boy before cancer develops. The survival rate for liver transplant patients is about 80%, but if cancer sets in before a new liver is transplanted, the rate drops considerably.

The family has been told that once a patient is on the National Donor List, it takes about eight months for an organ to become available. Jordan is expected to complete the screening process to be placed on the list in about two weeks.

For now, Jordan is relatively healthy. Vitamin and mineral supplements, at a cost of $500 a month, have improved his condition to the point where he is strong enough to withstand surgery if a liver becomes available.

The improvement in Jordan’s health has also made him a typical 2-year-old, active and curious. Discipline isn’t easy, his mother said, because his physical condition is always on her mind.

“It breaks my heart when I have to discipline him,” McNeill said. “I think about the fact that he might not be here with me next year.”