Meet Senya: 2021 Family Advocacy Week Champion

Senya is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Senya and his family will discuss his health journey, CHOC Children’s Hospital of Orange County’s role in providing Senya with necessary health care services, and why the public and our elected officials must invest in the future of patients like Senya.

During Theresa’s pregnancy, doctors were closely monitoring Senya's growth as they had noticed abnormalities during an ultrasound. He was born premature at 33 weeks and three days. 

At four months old Senya was diagnosed with microvillus inclusion disease, a rare genetic disease of the intestine that causes severe diarrhea and an inability to absorb nutrients. He was also diagnosed with cholestasis, a condition in which the flow of bile from the liver is reduced or blocked. 

When we received this diagnosis at the young age of four months, we knew challenges would surround Senya’s health in the long term,” says Theresa.

The family prepared themselves for long hospital stays and learned how to feed and care for Senya using Total Parenteral Nutrition (TPN) a method that bypasses the gastrointestinal tract and fluids are given into a vein to provide nutrients. 

At two years old, Senya is stable and doing well. He loves to dance and listen to music. He still needs regular tests, lab work and treatments to monitor his health and manage his TPN administration. He is also itchy, as a side effect of his cholestasis.

“It hasn’t been easy,” says Theresa. “But CHOC Children’s has been great and are helping Senya to be as healthy as possible so that he can grow strong.”

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published this page in Blog 2021-05-17 08:26:50 -0400