Shane's Life Expectancy with SMA Type 2

Shane was born with Spinal Muscular Atrophy Type 2, a progressive disease that causes muscle deterioration and weakness. Today, we discuss his life expectancy and how a breakthrough treatment, Spinraza, has greatly changed his future.

Hannah and I absolutely love making videos for you. If you would like to support our work so that we can continue sharing our life and relationship with you for years to come, you can do so on our Patreon: https://www.patreon.com/squirmyandgrubs

Thank you SO much!

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Squirmy and Grubs
PO Box 16411
Minneapolis, MN 55416

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Intro animation made by Pinkietoons! Check out her Instagram page to see more of her awesome work: https://www.instagram.com/pinkietoons

Shane was born with a neuromuscular disease called Spinal Muscular Atrophy that requires him to use an electric wheelchair. He is the author of several award-winning books, the President of a nonprofit organization called Laughing At My Nightmare, and a renowned public speaker who has performed across the country at places such as Harvard University, The University of Florida, The University of Connecticut, Princeton University, and many more.

Hannah is a senior at Carleton College, studying sociology and anthropology. She works as a researcher for an educational consulting firm. Her future aspirations include attending law school and owning a goat sanctuary. She films and edits the “Squirmy and Grubs” vlog.

Shane and Hannah have been dating for over 2.5 years and living together in Minneapolis in recent months. Their interabled relationship often confuses people, because much of society still cannot fathom people with disabilities being involved in loving, intimate relationships. Anyone who watches these episodes will quickly see their relationship is just as “normal” as any other. Sure, Hannah helps Shane use the bathroom and brush his teeth, but those activities do not detract from the emotional, intellectual, and physical connection they experience together.