Families Matter Stories

Welcome to our Families Matter stories! Told mostly through video, they will introduce you to children and young adults who are deaf-blind and their families. As you get to know them, you will discover how individuals who are deaf-blind learn, develop, and live their lives.

Meet Paul Uribe

Paul smiles

Paul, age six, lives in California with his parents. He has combined vision and hearing loss due to CHARGE syndrome. His parents have made it a priority to connect with other families through the CHARGE Syndrome Foundation, their state deaf-blind project, and social media.

Meet Ava Bullis as She Transitions to a New School

Ava, with sunglasses resting on her head, smiles at the camera.

Ava lives in New Jersey and has combined vision and hearing loss due to Usher syndrome. Her family recently moved to a new town, and she changed schools at the beginning of fifth grade. Parents, administrators, and teachers worked together to make the transition as smooth as possible, and she's thriving in her new school.

Meet Liam Kenrick

Liam sits at the top of a slide.

Liam, age seven, lives with his family in South Dakota. He became deaf-blind due to meningitis at age 2½ and communicates using American Sign Language. He is also a braille reader. His mom, Sandy, has found many creative ways to make home, school, and community as accessible as possible to him.

Meet Soliz and Camila Magdelano

Side profile of Soliz wearing glasses and showing his green hearing aid.

Camila smiling while sitting in a chair outside.

Soliz, age eight, and Camila, age seven, live in Phoenix, Arizona with their mom (Heather Joy), dad (André), and dog (Sammy). Their family loves to travel and recently went on a camping trip to Malibu, where the children were immersed in nature and sensory experiences.

Meet Jake

Jake is 22 years old and just graduated from high school. He currently lives with his mom (Dee), dad (Ernie), and brothers, Connor and Patrick, in Lawrence, Kansas.

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