Meet Zachary: A C.S. Mott Children’s Hospital Champion

Meet Zachary: A C.S. Mott Children’s Hospital Champion

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

Zachary needed special care when he got severely ill in the NICU at only 2 weeks old. He was diagnosed with cerebral palsy, as well as short gut syndrome, epilepsy and developmental delay.

Zach, a C.S. Mott Children's Hospital champion,
is participating in Family Advocacy Day 2023.

“The immediate impact was shock,” says Brendan and Helene, Zachary’s parents. “Shock then turned into a fierce drive of wanting to create a strong, hopeful and loving home life for Zach—no matter what that may now look like.”

Zachary is dependent on total parenteral nutrition (TPN) for nutrition and his electrolytes and nutrition are closely monitored. If they are not maintained, he is hospitalized to get them stable. Zachary also has a central line, which is monitored and periodically checked. With any fever or illness, he is hospitalized to rule out infection. Other ongoing treatments include respiratory therapies, EEGs and comfort management for his symptoms.

He also has evaluations and therapies for cerebral palsy and epilepsy to assist with his limited mobility and motor control. Zachary has chronic conditions that are treated daily and getting more complicated. He is awaiting surgery for a baclofen pump to help with symptoms of cerebral palsy.

With private coverage, insurance is a tough world to navigate for Zachary’s parents. “We are in this climate and have been for a little over seven years,” share Brendan and Helene. “Keeping track of paperwork, deadlines and renewal information is one of the more confusing and hardest things to navigate. Thank the Lord for social workers at C.S. Mott and their willingness to help forgetful, busy parents!”

Today, Zachary is doing well and closely supported by his family and providers. He loves dancing and listening to music.

Family Advocacy Day

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