Primary Immunodeficiency Disorder
According to world-renowned Children’s Hospital Los Angeles immunology specialists, immunodeficiencies comprise a group of natural, acquired or hereditary disorders that prevent the immune system from functioning normally. Children with immunodeficiencies can develop frequent, unusual or severe infections. Examples of immunodeficiencies include decreased immune resistance in premature infants (natural), HIV/AIDS (acquired) and severe combined immunodeficiency, also known as bubble boy syndrome (inherited).
The Division’s board-certified specialists use a holistic approach to care for children, as the management of chronic disease requires much more than just treating medical complications. Coordinated treatment plans are tailored for each patient and the family’s needs, taking into account culture, economic status and belief systems.
Roxie was diagnosed at four. We gave her weekly infusions of adult antibodies every week thereafter. The infusions involved assembling the infusion equipment, inserting a needle into Roxie’s belly and monitoring her during and after the treatment. Her discomfort level was minimized by numbing ointment. Her bravery was top notch.
Dr. Joseph Church was Roxie’s immunologist who diagnosed her and cared for her like a grandfather. He was someone who called us on any random Saturday and said, “Hey, I’ve been thinking about Roxie and you guys and I want to talk about some ideas.”
Dr. Church also spearheaded a special research experiment using a tissue sample from Roxie, which now resides in a German laboratory for further scrutiny. I guess you can say that a part of Roxie is still literally alive.