Boy Faces A Perilous Christmas

This kid can’t be sick.

Toddling around his living room, giggling and chattering into a toy cell phone, Jared Alexander looks as full of life as any other 22-month-old imp.

Sick? No way.

The illusion lasts until Jared’s mom, Bridget, hauls out some photographs taken last October at Spokane’s Deaconess Medical Center.

The Jared Alexander of these snapshots is as pale as Jacob Marley’s ghost. He lies rag-doll limp on a bed, hooked to a ventilator, barely clinging to existence.

It was a rare form of pneumonia called pneumocystis that put him in such dire condition. Jared has suffered from a rare immune deficiency disorder since his birth. He has virtually no defense against a common cold, let alone more exotic bugs.

“He was on life support. He just about died,” says Bridget, 25. Her eyes scan the pictures. “I was in shock. It all seemed so unreal.”

It took nearly five weeks in the hospital for doctors to beat back the pneumonia.

Remarkably better now, Jared’s universe is confined to the walls of his modest South Hill home. Because of his vulnerability to infections, he can’t be around groups or risk going out in public.

Jared’s future hangs on a bone marrow transplant scheduled for Dec. 12 in Seattle. His 5-year-old sister, Juliana, is a perfect match. She will supply the marrow needed for the transplant.

So while most families are picking out trees and digging out the lights and the tinsel, the Alexanders are gearing up for an expensive and emotional marathon.

They must leave their home and move to a Seattle apartment for perhaps the next six months. Christopher, 26, husband and father, is working out arrangements with his job at AT&T Wireless.

Insurance will cover much of the $250,000-plus procedure. But thousands more will be needed to pay living expenses in Seattle as well as the mortgage on their Spokane home.

“Everybody’s getting ready for Christmas, but it doesn’t feel like it here,” adds Bridget. “Christmas is the last thing on my mind.”

All parents want to believe their child is one of a kind. In Jared’s case it’s unequivocally true.

His condition is so off-the-charts unique that some specialists dealing with his case have dubbed it “Jared’s Disease.”

Not many children suffer from Severe Combined Immune Deficiency Syndrome, or SCIDS for short.

Then there is Jared, whose case is in completely unknown territory. He doesn’t have any of the charted varieties of SCIDS. Immunologists in America, Japan and Italy are pondering his case and remain perplexed as to its cause.

The one thing they can agree on is that without a marrow transplant, his life surely will be short.

The idea is to build him a new immune system with his sister’s marrow, says Dr. Judy Felgenhauer, Jared’s Spokane pediatric oncologist.

That’s not an easy fix.

Half the kids in Jared’s age group who undergo a bone marrow transplant die from complications. Because of that chilling statistic, doctors have come up with a less debilitating minitransplant.

The procedure still uses radiation to destroy a patient’s old cells, but it doesn’t add on high doses of chemotherapy before the marrow transplant. Immuno-suppressive drugs are added instead.

The concept, says Felgenhauer, is to get rid of enough of the old system to allow the new system to take hold.

It’s tricky and scary stuff. Jared will be only the eighth child to receive a minitransplant in Seattle.

Of that number, says Bridget, only one child came through with real success. Two others died. The remaining four have developed a disease and are in danger of rejecting the donor marrow.

So if anyone’s looking for a Christmas miracle this season, remember a little charmer named Jared Alexander in your prayers.

“This is a science fiction horror movie,” says Bridget. “But Jared is a strong kid. We just have to do what we can do each day and not think about all the bad things that can happen.”