Meet Zachary: A Lurie Children’s Champion

Meet Zachary: A Lurie Children’s Champion

During Family Advocacy Day, Zachary and his family will discuss his health journey, Ann & Robert H. Lurie Children’s Hospital’s role in providing him with necessary care, and why we must invest in the future of patients like Zachary.

Zachary started having seizures at three years old, and his parents knew right away that he would need specialized care from Ann & Robert H. Lurie Children’s Hospital.

Fast forward several years and at 16 years old, Zachary was diagnosed with systemic lupus erythematosus, along with mixed connective tissue disease, CNS vasculitis and arthritis.

Zachary, a Ann & Robert H. Lurie Children’s
Hospital champion, is participating in Family
Advocacy Day 2023.

“The immediate impact of Zachary's diagnosis was devastating in myriad ways,” says Denise, Zachary’s mother. “The diagnosis and setbacks were extremely difficult for Zachary emotionally.”

He was diagnosed following a stroke, right as COVID-19 restrictions were just ending and Zachary had just returned to school for his junior year. “As a result of his diagnosis, he had to resume home-based learning for the duration of his year,” says Denise. “Autoimmune disease is particular in that you don't treat the disease, you treat the symptoms to keep the disease at bay.”

Zachary’s care is managed by regular rheumatology appointments and bloodwork to track the progression of the diseases and the effectiveness of his medications were the initial routine.

After his stroke he spent a week in the ICU and a total of ten days in the hospital. The number of specialists required vastly increased. In addition to rheumatology, he is now followed by the neurology, pulmonology, ophthalmology, hematology, occupational therapy and physical therapy departments.

Despite consistent, effective care at Lurie Children’s, Denise and Zachary faced issues with insurance when he was prescribed a drug that was denied coverage. They started the appeal process, but in the interim he still needed the medicine.

“The most infuriating thing is that autoimmune diseases are often treated with medications that were developed to treat other diseases because with autoimmune disease you treat the symptoms more so than the actual disease,” says Denise. “Insurance companies will often challenge the prescribed drugs used for illnesses that they were not developed for.”

Zachary is doing well and has resumed almost all regular activities. He is on several medications which he will have to take for the next five years or so to remain in remission. In his free time, he loves practicing and playing oboe.

Family Advocacy Day

Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.