Parents’ Perspectives on AFM
May 15, 2019
Father of Joey, diagnosed with AFM in 2018
Jeremy Wilcox is a husband to his wife Jess, and father to their 8 children. He is a graduate of Geneva College with a B.S. degree in Business. His 4-year-old son Joey was paralyzed from the neck down and diagnosed with Acute Flaccid Myelitis (AFM) in September 2018. Joey spent 36 days in the hospital, first in the ICU, and then in-patient rehab at the Kennedy Krieger Institute in Baltimore, MD. Joey continued out-patient therapies for six months. Through intensive daily therapy, Joey has regained the ability to walk, run, jump and has full use of his arms and legs. Jeremy began his AFM advocacy efforts in October 2018, first with Virginia Department of Health, with the agency admitting suspected and confirmed cases of AFM existed in the Commonwealth. Jeremy helped bring together AFM families and leadership at CDC and NIH, elected representatives in Congress, and presented to the CDC AFM Task Force in Atlanta. Jeremy was a guest on Matter of Fact with Soledad O’Brien, has interviewed with NBC, ABC and CNN, and is a parent representative for the AFM Working Group headed by Dr. Carlos Pardo that brings together dozens of stakeholders collaborating to improve AFM patient outcomes. Jeremy has been advocating for federal funding for AFM research, transparency in state reporting including making AFM a national notifiable condition, and most importantly, raising overall awareness for this uncommon, devastating illness.
Mother of Braden, diagnosed with AFM in 2016
Rachel Scott is a mom of five kids, ages 10 years to 10 months. She graduated from Kansas State University with a Bachelors in Secondary Education and from Harvard University with a Masters in Math Education. She taught middle school math until the birth of her second child, Braden. Braden was a happy, healthy kid until he was diagnosed with Acute Flaccid Myelitis a few months after he turned five. Braden spent almost 8 months in hospitals and rehab before he was able to rejoin his family at home. Braden has made tremendous progress–from having movement in just one hand, to being able to walk short distances and use his left arm. He still requires full time nursing to care for his breathing and feeding needs. Over the past three years, Rachel has become therapist, nurse, cheerleader and advocate. Rachel is on the board of the Acute Flaccid Myelitis Association, a non-profit that aims to support and advocate for families affected by AFM. Her desire to advocate for better education, methods of diagnosis and treatment of AFM has brought her to Washington DC to meet with legislators and to Atlanta to meet with CDC’s Task Force on AFM. She’s also a member of the parent subgroup of the AFM Working Group. Braden’s story has been featured on many major news outlets, the front page of the Houston Chronicle, and as the subject of a NBC mini-documentary. Even though she has found herself in a role she never could have imagined, she’s still able to find goodness in her day and loves watching all of her children grow and achieve new things.