Personal Statement – Written for USC LEND Fellowship Program, 2019
Written by Alison Beier
For the greater part of 2013, I rushed my son to the hospital every three to six weeks to be treated for septic shock – the often-fatal condition, triggered by relentless infection and an increasingly fragile immune system. Evan, age 4, waited for a new kidney. His first transplant, scarred from repeated infections, required nephrostomy tubes to drain. Doctors pushed to remove the ailing graft; they were convinced we were out of options. The head of the department berated, “If we don’t remove it, your son will die!” Taking the kidney posed considerable risk; Evan’s life would rely solely on hemodialysis (HD) yet there was little guarantee HD was even possible. Evan endured countless complications from dialysis as an infant; I was present for every single one. I foresaw the uncertainty of HD and firmly advocated for another approach. In a hospital first, I was permitted access to a vital organ; sterilely drawing and pushing IV antibiotics directly into Evan’s kidney, daily. It worked; Evan remained infection free until his successful transplant months later. Despite adamant pushback, Evan’s team and I effectively aligned our efforts and found another way.
As a member of UCLA Mattel Children’s Hospital Parent Advisory Council (PAC), I was able to leverage my experience with sepsis that year to support a successful PAC collaboration with the Emergency Department (ED) at UCLA Ronald Reagan Medical Center. The partnership birthed code sepsis protocol for implementation in the ED. Today, Code Sepsis is in place systemwide throughout UCLA Health.
Born into a family of special education teachers and local legislators, I am naturally inclined to serve others. I was reading from a pulpit, in front of hundreds, by the age of ten; worked polls on election days; and served as student council president. As a Special Needs Advocate, I strive daily to reduce disparities of services for Latino and African American families. My passion lies in ensuring all people are seen, heard, and valued. I believe when everyone has equitable access to the benefits and support they need, their lives are more productive and fulfilling.
I have first-hand experience navigating the system beyond the needs of my son. I’m not only advocating at his bedside, I am presenting in boardrooms of the hospital; speaking in conference rooms filled with doctors, nurses, and hospital staff; providing peer-to-peer support in family homes; and lobbying in hallways, offices, and elevators in Sacramento and DC. Speaker Nancy Pelosi described me as, “impressive and eloquent.” My district Assemblymember, Al Muratsuchi, recently invited me to write a Medi-Cal bill.
My talent lies in telling my story to open lines of communication between providers and patients. I look forward to lively dialogue with California Leadership Education in Neurodevelopmental Disabilities (CA-LEND) peers and aspire to be a positive contribution to the program. My greater vision is co-designing systemic change with leadership at local, state, and federal levels. CA-LEND’s structure provides a thorough and in-depth education – offering well-rounded perspective, opportunities for collaboration, and hands-on experience. My participation in the program will enable me to impactfully elicit sustainable solutions within our community. It is my hope, with LEND’s support, to co-author the first of many pieces of legislation, aiding in the access and delivery of specialized care for all children with physical and developmental disabilities and their families.