BY RAY SCHAEFER
Enquirer Contributor
Pam Gast and her baby son, Nathan.
(Steven M. Herppich photo)
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Nathan Gast didn't look the least bit sick this week.
Until he took a nap, the 6-month-old's blue eyes followed every move a visitor made, and he bounced in his "Exersaucer" as any other infant would.
But the Pierce Township boy also wore a yellow feeding tube, and he played in an isolation room at Children's Hospital Medical Center. He suffers from Wiskott-Aldrich Syndrome, a rare blood disease, and is to undergo a procedure next Thursday to replace his defective bone marrow.
Nathan's parents, Dave and Pam Gast, are optimistic.
"Right now he's doing really good," said Mrs. Gast, 26. "It helps that he's really strong for his age . . . It's just been so hard. I don't even know what to say; it's so hard to have a sick child."
Mr. Gast, 26, fixes fare boxes for the Metro bus system. He works from 4 a.m. to noon, then goes home, showers and drives to the hospital.
He wonders why Nathan was stricken with Wiskott-Aldrich. It drastically reduces the level of platelets (which affects the bloodstream's ability to clot), harms the immune system's ability to fight off infections and causes eczema, a severe skin rash.
"I feel bad I'm not here for Pam and Erin (the Gasts' 4-year-old daughter) because I've got to work," he said.
Mrs. Gast knows those feelings, too. "A big part of my guilt is with Erin," Mrs. Gast said. "She got a brother, but she kind of lost a mother. I've always been at home with her.
"She loves Nathan so much, but she can't play with him. She can't understand that."
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HOW TO HELP
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To donate to Nathan Gast's fund, write to the National Transplant Assistance Fund, P.O. Box 258, Bryn Mawr, Pa. 19010. Checks should note that the money is for Nathan's fund. Call: 1-800-642-8399.
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The Gasts had never heard of Wiskott-Aldrich when Nathan was born Jan. 2, and they might not have known had they not decided to have their son circumcised three days later.
Nathan did not stop bleeding five days after the operation, and at 1 month he developed pneumonia. His parents thought meningitis was the problem, but subsequent tests and a trip to the National Institutes of Health in Bethesda, Md., showed it to be Wiskott-Aldrich.
Mr. Gast summed up his response in four words.
"Let's get it fixed," he said.
Nathan's immunologist at Children's, Lisa Filipovich, said Wiskott-Aldrich occurs in one of 4 million male births. It is a genetic illness that affects only boys and is caused by a recessive gene passed from the mother.
Dr. Filipovich said if left untreated, the average survival age is 15 years, and few live past 30. She said Nathan has a better than 80 percent chance of recovery.
"He is coming to the treatment with an early diagnosis," Dr. Filipovich said Thursday. "That's in his favor."
Dr. Filipovich said Nathan is undergoing chemotherapy to wipe out his defective bone marrow. Thursday, he'll receive about two ounces of umbilical cord blood, which produces new bone marrow.
The "cord blood" arrived at Hoxworth Blood Center July 8 from an anonymous donor in Germany, and it is needed because no one in Nathan's family is a close enough match for a bone marrow transplant.
Dr. Filipovich said the blood contains stem cells that produce the new marrow. She said it will take up to two months to notice any change, and it will take six months to a year to develop fully functioning marrow.
The medical bills and related expenses are staggering. Mrs. Gast said her husband's insurance covers only about a third of the $750,000 currently billed. The family also is incurring lodging, food, travel and baby-sitting costs.
Andrea Powers, a social worker at Children's, said there's not much financial help available because Wiskott-Aldrich is not a type of cancer.
Last month, the Gasts contacted the National Transplant Assistance Fund, a non-profit organization in Bryn Mawr, Pa., that gives fund-raising tips and sets up accounts to which people may send donations.
"Our role," said Diane Calder, NTAF patient services coordinator, " . . . (is) one of providing the families with the tools in guiding them through a successful fund-raising campaign."
Because Nathan is losing his hair from chemotherapy treatment, Mr. Gast has shaved his head, too. He can't wait for the day Nathan can come home.
"By that time, he'll have some hair," Mr. Gast said.
