Iris's Story,
Ready to Tell
Resources for journalists, documentary filmmakers, medical media, and advocacy organizations covering Iris Hope LaValle and MRPL39 mitochondrial disease.
Everything you need to cover Iris's story
Clinical Summary
Iris's complete clinical overview — diagnostic timeline, genetic findings (MRPL39 biallelic mutation, Leigh Syndrome), and treatment history. Suitable for editorial background and medical journalism.
Download PDFFamily Photos
High-resolution editorial photos of Iris and her family are available for approved press use. Contact the family to receive a curated selection. Please credit "Courtesy of the LaValle Family."
Request PhotosInterview Request
Casey and Amanda LaValle are available for interviews about Iris's journey, parenting through a rare disease diagnosis, and their advocacy for MRPL39 mitochondrial disease research. Subject to scheduling.
Request InterviewB-Roll & Video
Video footage of Iris and her family is available on a case-by-case basis for broadcast and documentary coverage. Please contact the family with your outlet and story details.
Request VideoKey Talking Points
A one-page summary of the key facts, statistics, and narrative angles surrounding Iris's case — ready for editorial briefings, segment producers, and show prep.
Request Talking PointsSocial Media Assets
Follow Iris's journey on Facebook for real-time updates, family photos, and shareable content. Tag @KidWithMito or use #HopeForIris when sharing her story.
Follow on FacebookThe story at a glance
Meet Iris's parents
Casey and Amanda are available for interviews, panels, and advocacy events.
Casey & Amanda LaValle
Parents of Iris Hope LaValle · Venetia, Pennsylvania
Casey LaValle is the father of Iris Hope and a deeply informed advocate for her care, well-versed in her genetics, clinical course, and the broader research landscape. Amanda LaValle holds a Master's degree and is a licensed Speech-Language Pathologist (MA, CCC-SLP). Amanda's clinical background proved pivotal in Iris's diagnosis — she recognized the signs that led to genetic testing and pushed for the Modified Barium Swallow Study that revealed silent aspiration, directly impacting Iris's course of care.
Together, Casey and Amanda have documented Iris's entire journey publicly on Facebook to raise awareness of MRPL39 mitochondrial disease and advocate for rare disease research funding. They are available for interviews, panels, and media engagements on rare disease awareness, parenting medically complex children, and the role of parental advocacy in diagnosis.
Press coverage
Iris's story has been covered by national media. If your outlet has covered Iris and you'd like to be listed here, please reach out.
"Mom Learns Baby Is One of Six Born With Rare Disease" — A feature story on Amanda and Iris's journey to diagnosis, published November 2025.
Read Article →Has your publication covered Iris's story? Contact us to be added to this list.
Submit Coverage →Ready to tell Iris's story?
We welcome all media requests and are happy to respond quickly. For the fastest response, email us directly — we typically reply within 24 hours.