Meet Sarah and Amelia: 2021 Family Advocacy Week Champions
Sarah and Amelia are participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Sarah, Amelia and their family will discuss their health journey, UCSF Benioff Children’s Hospital’s role in providing them with necessary health care services, and why the public and our elected officials must invest in the future of patients like Sarah and Amelia.
At birth, Sarah had a heart murmur and was soon diagnosed with hepatitis C. She was quickly monitored by a cardiologist and hepatologist.
Then, around a year later, Sarah’s sister Amelia was born with a heart murmur, severe asthma, conditions related to being premature, and neonatal abstinence syndrome (NAS).
“We realized our lives would never be the same,” says Nancy, Sarah and Amelia’s mother.
Meanwhile, Sarah’s hepatitis advanced rapidly, and the specific genome type meant it was unresponsive to treatment. After years of waiting, Sarah was accepted into a pediatric drug trial for treatment at UCSF Benioff Children’s Hospital that cured her hepatitis C.
Amelia was doing well by her second birthday, but then around 4 years old, she started to exhibit symptoms. From that point on, Amelia was admitted to UCSF Benioff regularly for diagnosis, pain management, and symptom control.
When the family shifted care to UCSF Mission Bay the primary goal was to diagnose her. At 6 years old, Amelia was diagnosed with Behcet’s disease, Crohn's disease and an undiagnosed systemic autoinflammatory disease.
“It's hard knowing that there are no cures for Amelia,” says Nancy.
The COVID-19 pandemic has been hard on the sisters, as they’re unable to attend school or see their friends as often or go to Amelia’s treatments together.
Now at 14 years old, Sarah has struggled with a chronic neurologic condition and depression. She’s seeing a neurologist and pain management specialist but loves playing with the dogs. Amelia, now 13 years old, is receiving infusion treatments and loves being able to ride horses.