Taking Control of the Narrative Podcast By cover art

Taking Control of the Narrative

Taking Control of the Narrative

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 On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Amy and Lazer Schefer, a dynamic mother-daughter duo who have turned their personal challenges into a mission of advocacy and support for the craniofacial and rare disease communities. Join us as we explore their inspiring story of resilience, the challenges they’ve overcome, and the impact they continue to make on the lives of others. - [Announcer] Welcome to "My Face, My Story: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg. - Hello, and welcome to "My Face, My Story: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and director of Family Programs at My Face. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face, My Story" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click "Subscribe" now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "My Face, My Story," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Amy Schefer and her daughter, Lazer. Amy is a passionate advocate for the craniofacial and rare disease communities. She is Lazer's mom and a director of Advocate Angel, an organization that helps guide families through the medical maze. She shares her intense journey as a medical mom, navigating with Lazer through dozens of surgeries and challenges to engaging in pioneering research efforts and advocating tirelessly in one-on-one family assistance endeavors and legislative action. Lazer is a 20-year-old patient advocate and public speaker with Goldenhar Syndrome. She has appeared on the TLC series "Two in a Million: A Face Like Mine." She has also appeared on numerous podcasts and radio interviews and has moderated panel discussions at Seattle Children's Hospital. Welcome Amy and Lazer. I really look forward to our conversation. - Hi. - Hi. - Hello. - Us too. - Yeah. So, Amy, can you share the early days of your journey with Lazer's diagnosis and what were some of the initial challenges you faced as a mother navigating the medical care system and her care? - Well, we're country folk, and one of the biggest challenges that we had is we were at a teeny tiny hospital, nobody had ever heard of Goldenhar. We had a great emergency room, I mean NICU doctor, who stayed up all night trying to figure out what condition this may be. But the fact that we were farther away from the central areas where medical care happened made it more difficult, And then early on, we also, we knew we needed to get to a craniofacial team. - Right. - The team that was assigned to us through our insurance was a not well-known team. They met once every three months. They brought, they brought somebody in who said, you know, who was a professor emeritus, you know, who said, "Wow, this is really, "you won't find a kid like this very often." And that was kind of like- - Wow. - Their amassed wisdom, and it was hard... to get referred to the top team in the state, and the top team in the state was in disarray. They kept losing their funding. So, one of the biggest challenges for me, aside from not knowing ahead of time, despite all the ultrasounds and stuff, that Lazer was gonna be different, one of the biggest challenges was just getting situated in the right medical team so that the quality of care could be better than what we started with. - Mmm, right. And- - Yeah. - So you did not know, and did, and was there anybody else in your family that you knew of that had Goldenhar or? No, so this was a total- - No, the one and only. - Surprise for you. - Yeah. And luckily my dad was a psychiatrist, so he went to medical school. So he asked all of his med school buddies, "What do you do in a case like this?" And they said, "Find a craniofacial team." That was pure luck- - Right. - And not something that most people have. And, you know, some of the reason I just became an advocate is because... the information that families have access to is so scattershot. - Right. - And if you don't have that information, your results are way different. And not only that information, but lots of other kinds of information. So- - Mm-hmm. - We also just didn't have really great facilities, we didn't have great home health agencies, we didn't have, you know, it was, I had to learn how to fire people who were coming to take care of Lazer who- - Right. - Who, you know, didn't do as good a job as they needed to. - Right. - Lazer had a trach and a G-tube at the beginning, and other things, and it, you know, substandard care doesn't...
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