News

Living life, two years at a time

By Rachel Ohm

NEW BALTIMORE — Tori Russo wants to be a zookeeper when she grows up.

“That or I want to clone extinct or endangered animals so they are no longer extinct or endangered,” she said matter-of-factly, shrugging as if that sort of thing is done everyday.

Bright and energetic, Tori is defined by her relentless can-do attitude, a characteristic that may one day help her achieve such aspirations but in the meantime can only go so far in keeping the 12-year old girl healthy.

Since she was diagnosed with Common Variable Immune Deficiency (CVID) as an infant, Tori has relied on blood infusions to keep her alive.

CVID is a primary immunodeficiency disorder that affects roughly one in 20,000 people. Because of a gene mutation, Tori’s immune system is unable to produce sufficient antibodies to protect her from everyday germs, viruses, bacteria and pathogens and as a result she becomes sick easily.

“My immune system just doesn’t work,” Tori says, then pauses and looks to her mother, Lisa. “Do I even have one?” she asks.

“With her disease, everyone and everything is dangerous to her,” said Lisa, who often refers to CVID as “the boy in a bubble” disease.

Lisa, who is also affected by CVID, was diagnosed with the disease as an adult after a seemingly never-ending bout of bronchitis. Although CVID is hereditary, she says she has no knowledge of anyone in her family being formerly affected.

“CVID is almost as prevalent as insulin-dependent diabetes,” said Tori’s dad, Tom Russo. “Yet everyone knows about diabetes and no one knows about this.”

Once a month, Lisa receives a blood infusion, which contains only the plasma part of the blood, in her arm, while Tori receives the same through a port in her chest every two weeks. Made up of vital proteins such as fibrinogen, immunoglobulins and albumin, the plasma is the liquid part of the blood and is yellow in color. Plasma infusions are also used to treat Multiple Sclerosis and neuropathy.

Between 10,000 and 60,000 blood donation units are needed to produce 500 grams of Intravenous Immunoglobulin (IVIG), the plasma product used in the infusion. This would be enough to supply Tori, who receives 10 grams at a time, for about two years.

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