Laura Anderson's son Dawson, 9, has a Primary Immune Deficiency (PI), one with a defect in humoral immunity (immunity mediated by circulating antibodies), which means his body does not produce enough antibodies to fight infection.
"Dawson was diagnosed at age 5 after many infections that would start and be treated and come back with a vengeance before antibiotic treatment could be finished," she says. Laura says she learned that it's okay to question doctors, seek second or even third opinions. "This is your child, and you know your child better than anyone else," she adds. "If an infection keeps coming on frequently, someone needs to look deeper. "
There are many forms of PI, and it can be hard to diagnose. Physicians sometimes treat the infections while missing the underlying cause. Kids with primary immune deficiencies often need regular infusions of immunoglobulin replacement therapy, administered intravenously. For Laura and Dawson, that meant a three-hour roundtrip drive every three weeks from their home in Lakeland, Fla., to the closest hospital that could provide the therapy. "We had 12-14 hour days all the time," Laura says. "He often endured several needle sticks before a working vein could finally be accessed. "
It was an emotional roller coaster for Laura. "I tell him that if I could take these drugs for him, I would," she says. "He used to get sick in the car the entire trip from anxiety and say, 'Mommy please don't make me do it.' It's the toughest thing for a parent – you know he has to have the treatment but it causes him discomfort. I felt like a failure as a mom."
Laura looked for help. She is a big believer in support groups for kids and parents dealing with PI and is an active volunteer with the Immune Deficiency Foundation. At an educational support group meeting, she heard about subcutaneous (subQ) treatment. SubQ means the therapy can be self-administered at home, once a week, through small needles under the skin, so no more long days of driving for treatment. A nurse visited the house to teach the subQ infusion process to Laura and Dawson. Now, once a week, Dawson receives his infusion therapy at home. "He's getting to where he helps me set up his sites to do the infusions and then helps take them out," Laura says.
Last Mother's Day, Dawson and his dad gave Laura a customizable charm bracelet and one new charm. "I'm hoping for another charm this year," Laura says. She's earned it, and a full bracelet more.