Meet Amelia and Sarah: 2022 Family Advocacy Day Champions
Amelia and Sarah are participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Amelia, Sarah and their family will discuss their health journey, UCSF Benioff Children's Hospital Oakland’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 Amelia and Sarah.
Amelia and Sarah were both former foster youth and considered medically fragile when they were born. Amelia was born prematurely with cardiac issues and Sarah was born with hepatitis C and cardiac issues as well.
“I met Amelia’s cardiologist before I met her,” says Nancy, Amelia and Sarah’s mother. “She was about 8 when it was clear she had a serious chronic systemic disorder.”
Amelia has a large care team with over 20 specialists. “Her diagnosis changed our entire lives,” says Nancy. “She lives with chronic illness and is episodically disabled. There were some months we had over 25 appointments. It has not been possible to have a traditional, full-time career or do regular family things.”
Today, Amelia still has chronic conditions and is currently quite ill, having been diagnosed with post-viral syndrome, struggling with fatigue, pain, a chronic migraine and more. She has been sick in bed since January, though this past month she has been able to get out of bed for 3-4 hours a day. COVID-19 interfered with her regular infusion cycle and her underlying illnesses flared up meaning she ended up in the hospital.
“This has been a pretty bleak time health-wise for her,” says Nancy.
Sarah, who uses the pronoun they, was diagnosed the week their family brought them home. “It was concerning because Sarah’s liver was at risk and there was no cure or therapies for the genome type of hepatitis C they had,” says Nancy. “We owe everything to the research team at UCSF that got them into a successful clinical drug trial.”
Most recently, Sarah was diagnosed with a rare neurological condition that causes continuous pain.
“Today, Sarah is doing OK,” says Nancy. Their neurologic condition is managed by the team of providers, with the recent addition of acupuncture, as recommended by the UCSF adolescent medicine doctor. Sarah also struggles with ADHD and depression.
The COVID-19 pandemic was especially tough on the family. Amelia is on immunosuppressants, so they were extremely isolated.
“Sarah and Amelia lost their dad in 2013,” says Nancy. “I am a single parent and the pandemic eliminated access to our support network, despite provider care, help with caregiving, etc.”