Published: Friday, October 12, 2007
East Wenatchee girl has rare immune deficiency
EAST WENATCHEE — After six boys, Debra Anderson said before the birth that it felt like the chances of her first grandchild being a girl were one in a million.
And yet there she was, so doggone cute her grandparents couldn’t believe it. Scarlet Rose Anderson was born April 10, 2007, a beautiful daughter for Charles and Kati Anderson of East Wenatchee.
Scarlet Rose was indeed a one-in-a-million baby, but not because she was the first girl born to a family with a tendency toward boys. She was born with SCID, an extremely rare condition better known as “bubble boy disease.”
The name was popularized by the 1976 John Travolta TV movie, “The Boy in the Plastic Bubble,” about David Vetter, a boy who lived for 12 years in a germ-free plastic bubble.
Plastic bubbles are no longer used to protect patients with severe combined immunodeficiency, a disease that leaves the patient without normal immune protection. Bacteria and viruses that might cause a normal person to catch a cold could easily kill a person with SCID.
“It’s very scary. You know if she were to catch anything, her chances of survival would be very slim,” Debra Anderson said by phone Monday from a room in a sterile ward at Children’s Hospital in Seattle.
Kati and Scarlet Rose have been there since May 19, when the baby was diagnosed with SCID and transported from Central Washington Hospital. She was just 5 weeks old.
“She’s just a normal baby,” said Kati Anderson, 26. “We can hold her. We can even take her out in the hall.”
But Scarlet Rose doesn’t get to leave the sterile ward. All those who come to see her must be free of germs. Kati has been with her daughter in the hospital room all of that time except for a few quick trips home. Scarlet Rose is still fighting off an infection from a virus that most people carry every day without ill effects.
She’s also recovering from a bone marrow transplant on Sept. 18. That and a subsequent T-stem cell transplant from the same anonymous donor offer Scarlet Rose a chance to survive and possibly live like others.
The best-case scenario would bring Scarlet Rose home for Christmas. If things go well, she and her mother may be able to move out of the hospital to a room in the Ronald McDonald House next month. Special care will have to be taken in the coming year, and she may have to always live a sheltered life away from coughs and sneezes.
In the meantime, Charles, her father, and Len, her grandfather, have been working on the Anderson house to make it as sterile as possible. Insurance and Medicaid will pay for most of the more than $1 million in medical expenses. But Len and Debra are considering taking out a second mortgage on their own East Wenatchee home to help their young son and daughter-in-law pay for making their house as germ-proof as possible.
The house needs new siding because fungus was found in the walls. It needs all new carpeting and furniture and a specialized air filtration system. It also needs a new roof — the old one blew off in the January windstorm shortly after the couple bought the home.
“It was pretty devastating,” Kati said about learning that Scarlet Rose has a rare disease. “But it’s really a miracle that it was diagnosed so early. It’s given her a chance. It’s still too early to know what her life is going to be like. We’re hopeful that she’ll be able to live a normal life.”
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