What happens when the child you've dreamed of suddenly receives a diagnosis you've never even heard of? For Deborah, it was Angelman syndrome.
In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Deborah Trejo, Art Therapist, to share the powerful story of her daughter Maya's journey to an Angelman syndrome diagnosis. After months of feeding difficulties, developmental delays, seizures, and countless unanswered questions, Deborah and her family finally received a diagnosis just one day after Maya's first birthday.
Deborah opens up about the emotional realities of medical motherhood—from surviving the uncertainty of the diagnostic process to learning how grief and joy can exist together. She shares how finding community through the Angelman Syndrome Foundation, connecting with other parents, and embracing art as a tool for healing helped her navigate one of the most difficult seasons of her life.
As both a mother and an art therapist, Deborah also reflects on maintaining her identity beyond caregiving, advocating fiercely for her daughter's needs, and celebrating every milestone along the way. Her story is an honest reminder that while a rare diagnosis may change the path a family expected, it can also reveal extraordinary resilience, purpose, and hope.
Whether you're a parent navigating a rare diagnosis, caring for a child with complex medical needs, or a healthcare professional supporting families through uncertainty, this episode offers compassionate encouragement and a reminder that you are never alone.
In This Episode, We Discuss:
- Deborah's journey from children's hospital volunteer to art therapist
- Maya's first year and the road to an Angelman syndrome diagnosis
- Early signs including feeding difficulties, developmental delays, and seizures
- The emotional experience of waiting for answers after neurological testing
- Receiving a rare diagnosis and processing grief as a family
- The importance of connecting with other parents and diagnosis-specific support organizations
- How art became a source of healing and resilience
- Balancing motherhood, career, and personal identity
- Becoming a strong advocate for a child with complex medical needs
- Finding joy while navigating the realities of medical parenting
Episode Timestamps
00:00 Meet Deborah Trejo
01:30 Maya's first year and the journey to diagnosis
05:30 Birth during COVID and early medical concerns
08:00 Developmental delays, seizures, and meeting neurology
11:25 Receiving the Angelman syndrome diagnosis
13:00 Processing grief and surviving the unknown
19:15 Becoming an art therapist through lived experience
21:15 Holding onto identity beyond medical motherhood
24:00 The Angelman Syndrome Foundation and family support
26:50 Learning to ask for help
28:45 Advocacy, milestones, and celebrating progress
31:55 Maya's joy and final reflections
Resources Mentioned
- Angelman Syndrome Foundation
- Angelman Syndrome Foundation (ASF) — this is the organization's official name.
- Foundation for Angelman Syndrome Therapeutics (FAST) — another major Angelman organization, particularly focused on research and therapeutics.
- First 100 Days Journey
- ASF Family Champions
- Clinical Care Toolkit
- NIH/NINDS Angelman syndrome information
Connect with Us
Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.
Keywords: Angelman syndrome, Angelman syndrome diagnosis, rare disease, rare genetic disorder, developmental delays, seizures in children, medical motherhood, caregiver support, parenting a child with disabilities, pediatric neurology, rare diagnosis, art therapy, family centered care, child life specialist, medically complex children, disability advocacy, parent support, pediatric healthcare, Inside the Children's Hospital Podcast
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