Meet Ethan: A UH Rainbow Babies and Children’s Hospital Champion

Meet Ethan: A UH Rainbow Babies and Children’s Hospital Champion

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

When Ethan was 7, he was diagnosed with Type 1 diabetes. “We were catapulted into a world that we barely knew about,” says Christine, Ethan’s mother. “But we were set up for success by being given the tools to navigate our new normal.”

UH Rainbow Babies and Children’s Hospital ensured that Ethan and his family were educated enough to feel safe to bring Ethan home post-diagnosis and to practice open communication beyond that. “My mother lives with us and has Type 2 Diabetes and is insulin dependent, so there was some sense of familiarity,” says Christine. “She was able to help us calm Ethan’s fears and with support from our entire family, we have been successful in our journey thus far.”

 

Ethan, a UH Rainbow Babies and Children’s
Hospital champion is participating in Family
Advocacy Day 2023.

Every three months, Ethan checks in with the endocrinology team to go over changes in care, adjustments in medications and updates in technology, and work together to make sure that he is on the right path. Ethan is currently using some of the latest technology for diabetes and it’s essential in managing his T1D.

The endocrinology team works in tandem with nutrition and mental health, where they discuss how food affects the body. Ethan also checks in with the behavioral health department monthly. “UH Rainbow Babies have worked with me through the years to help me manage my diabetes and help me understand that mental health is important and check-ins are important,” says Ethan.

Ethan and his family are managing the diagnosis well. “We have been prepared, supported and given the tools to get through,” says Christine.

In managing insurance coverage, Christine has to coordinate prior authorizations for the medications and technology equipment needed to keep Ethan alive and thriving. This ensures that Ethan’s insulin and tech is covered and set up for the year. “It is frustrating and difficult,” says Christine. “Insurance only allots for so much. We try to be conscientious of what we use and how much, there are variables that are out of our control.”

Today, Ethan is doing well. His favorite activities are gaming, photography, tennis and riding his bike.

Family Advocacy Day

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