Our courageous son does not make antibodies. He is living without an immune system during a pandemic. His official diagnosis is Common Variable Immune Deficiency (CVID) and for Scott, he has a severe presentation the disorder.
Our son Scott has always had a Primary Immune Deficiency. 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. Living on IG therapy is not easy. Infusion night can be hard. Side effects in the days after can be severe. And Scott does this every week. And while Scott responds well to treatment, other areas of his immune system are missing. It is not uncommon for us to see labs that say "trace" or "zero". There is no cure. He will never go into remission.
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.
Last year at age 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. We hope after all is settled down with COVID-19 that he can do his first ever IDF Teen Escape next summer. The teen escape teaches young patients how to do their own IG infusions, how to advocate for themselves in the community, and so much more.
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. In 2019, Team Murphy was the third ranked team at the Chicago Walk in terms of funds raised.
The Immune Deficiency Foundation is phenomenal. They train doctors, nurses and schools on the over 400 rare immune deficiency diagnosis. 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.
Your gift to IDF not only supports patients, it also supports medical research and care. Join us. Together, we are strong.