‘Youʼre Never Alone’

Danae Aguilar had to grow up more quickly than most kids. At just 10 years old, she became a medical interpreter and emotional support for her Spanish-speaking mother, Sonia; caregiver to a brother with a rare genetic disease; and veteran of Packard Children’s Hospital, where she celebrated birthdays and holidays during her brother’s long hospital stays. Today, as the mother of a child with the same genetic disorder and a Parent Mentor at Packard Children’s, Danae offers other parents the resources and emotional support her mother needed back then. 

Q: Can you tell me a little about how you first came to know our hospital, some 25 years ago? 

My brother, Angel, had Hunter syndrome [a disorder that keeps the body from breaking down certain sugars and, over time, impacts physical and mental development]. He was treated at Packard Children’s. My parents did not speak English, so I accompanied my mom to appointments to translate for her and help her cope. My life revolved around the hospital because he was there so often. 

You came back to our hospital again when you were pregnant with your son, Aiden, now 13. He was diagnosed with Hunter syndrome just a few weeks after you gave birth. What was that like? 

I chose not to do genetic testing when I was pregnant, because my mother told me: “If you can take care of your brother, you can take care of your own child.” I tried to be positive and convinced myself that Aiden would be healthy. I was devastated when I found out. I wouldn’t have gotten through it without my mom, who was, and still is, my biggest supporter. 

Two years after your son was diagnosed and his treatment began, you were connected to a mentor through our Parent Mentor Program. Tell me about that experience. 

Aiden and I were at a doctor’s appointment, and there was a knock on the door. Teresa Jurado, who manages the Parent Mentor Program, walked in and told me, “I have a child who is medically complex, and I’m a Parent Mentor.” We had a real connection right away, and she helped me through so many things. For example, I’d just moved to a new county and Aiden’s Medi-Cal insurance kept getting canceled. It was so stressful, but Teresa was there the whole time. She helped me go through the chain of command for Medi-Cal reinstatement and told me to photograph myself dropping off the forms so that I had proof if the administrators said they never received my documentation. Eventually, we got my insurance back, and she helped me get retroactive coverage for the period when we’d been uninsured. She also offered me so much emotional support and encouraged me to keep going with my education when I didn’t know if I could do it. 

You became a Parent Mentor three years ago, after working with Teresa for many years as a mentee. What inspired you to take the role? 

Teresa asked me one day, “How would you like to become a Parent Mentor like me?” and I realized it would be perfect. I loved the idea of guiding and supporting people in the same way that Teresa had supported me—and of being a resource to Spanish-speaking families. It made me think of my mother, who didn’t have a mentor and would have really benefited from that support. 

How have you liked working as a mentor? 

It’s been so great! I work with parents of children with medical complexity, like my son, Aiden. I often help them figure out how their kids can continue to go to school and get the resources they need—and how they can participate in activities, like swimming or horse therapy. I also help families who speak Spanish but, in some cases, can’t write in their own language. The flexibility of the job is perfect for me, too. If Aiden is unexpectedly hospitalized or gets really sick, I know that I can take the time off that I need—whether it’s a few days or two weeks. 

What’s your primary goal when you meet with a new parent? 

My first goal is to read the room to see if it’s a good time for mom or dad. Then I open the floor by asking, “How are you doing today?” That lets me know if they’re in the right space for a conversation—sometimes they’re overwhelmed or still processing and not ready to talk. But I always make sure they know I’m there and they can call me or text me at any time, and we can just connect parent to parent. 

What does being a Parent Mentor give to you? 

It reminds me that I’m not alone. There are other parents going through a similar situation. When I was first connected with Teresa, I realized it wasn’t just my family that was affected by health challenges, but it’s so many families across cultures. It made me feel more human. And being a Parent Mentor has made this feeling even stronger. It’s a privilege to help families with their needs, whatever they are at that moment.

Did you know? 

The Lucile Packard Foundation for Children’s Health has a grantmaking and advocacy program focused on transforming the health care system so that it works better for kids and families with the greatest health needs. 

Over the last 13 years, we’ve awarded more than $800,000 to family-centered care programs at Packard Children’s, including a Parent Mentor Learning Collaborative. One new investment is a three-year, $600,000 core support grant to launch a national Parent Mentor Learning Center for the development and implementation of a certification program available to children’s hospitals and other health care entities.