Our courageous son does not make antibodies on his own. His official diagnosis is Common Variable Immune Deficiency (CVID) and for Scott, he has a severe presentation the disorder.
We found out he didn't make antibodies when he was 19 months old. He spent most of his young life very ill. At age nine, he failed a vaccine challenge (which means that testing showed vaccines do not work on him). At age 10, he went on IG infusion treatment and started the life-long journey of relying on plasma donors. The diagnosis has been reviewed and confirmed by physicians at Lurie Children's, Advocate Children's, Mayo and Edward Hospitals. Living on IG therapy is not easy, and Scott does not enjoy the same quality of life as his peers. Infusion night can be hard. Side effects in the days after can be severe. Scott gets IG therapy every week. And while Scott responds well to treatment, other areas of his immune system are missing and there is no treatment to help him. It is not uncommon for us to see labs that say "trace" or "zero".
At the age of 12, a research team at Yale also found a genetic mutation for his secondary neuromuscular diagnoses. That medical breakthrough was found via a grant funded by the IDF using funds from this annual walk. During the pandemic, Scott faces bullying over health safety from adults and peers, both in school and out. The heavy volume of school life can diminish his health. It is not uncommon for Scott to have a health episode at school on his infusion day, such as severe dehydration, brain fog, or even passing out.
Scott lives under the constant fear of plasma shortages, insurance changes and exposure to sickness. He relies on others to vaccinate so he is not exposed to something deadly. When Scott gets a cold that may last in others for a week, he can be sick for months.
Scott has fought a long hard battle. He was accepted into Illinois' Early Intervention program in his first year. He was in the inaugural class of Naperville 203's new Ann Reid Early Intervention Center. He was a proud member of the Easter Seals community for nearly six years and a frequent spokesperson and fundraiser for other kids needing pediatric therapy. And he has walked the Walk for Primary Immune Deficiency every year that he was physically able.
How can you help?
People can help by: • Following guidelines from health experts/agencies • Vaccinating to protect Scott and others like him • Donating plasma (it takes hundreds of donations for one week of treatment for Scott). To find a plasma donation center, visit plasmahero.org • Donate to the Immune Deficiency Foundation (IDF) – the IDF trains doctors, nurses, and schools on the over 400 rare immune deficiency diagnoses. They fund medical research grants which are critical now more than ever. They advocate for public policies that will keep patients safe, with quality of life and alive. They work through legislative advocacy to make plasma available to patients. They have the highest rating a charity can receive on CharityNavigator.org. A gift to IDF supports patients medical research and care.