The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#142: Savannah and Will Huff, Interabled Couple

·50 min·3 clips

Savannah asked Will “how much I lifted” because caregiving expectations had to be clear from the start.

1. The Spinal Muscular Atrophy Podcast with Kevin Schaefer centers this episode on Savannah and Will Huff, an interabled couple from Thomasville, Georgia. 2. Kevin Schaefer hosts, says he has SMA type 2, and introduces Savannah Huff as his guest and Will Huff as her husband. 3. The episode asks how Savannah and Will built a marriage, caregiving routine, and shared life around SMA. 4. Savannah says she was diagnosed with SMA type 3 at three and a half and walked until she was 19. 5. She describes using a manual chair and a power chair intermittently before fully transitioning away from walking. 6. Savannah says she never saw herself as disabled in the early years because she lived a “normal lifestyle” for so long. 7. She explains that stepping up stairs and moving through the world on wheels became harder in her later years. 8. Savannah says she spent several years on Spinraza. 9. She says Spinraza gave her strength for a while, but side effects made it “much more of a con.” 10. Will says he grew up in Mississippi, went to college in Sanford and Mississippi State, and worked as a sports journalist. 11. He says his connection to SMA comes through his sister Emily, who was adopted from China and later diagnosed with SMA. 12. Will says his family first engaged with the broader SMA community at a 2017 conference in Disney World. 13. Savannah says her first conference was when she was four years old in Chicago, and she grew up attending conferences almost every other year. 14. She says the 2018 conference in Dallas was the first time she felt fully like an adult in the adults with SMA community. 15. Savannah says she connected with adults like Kevin and Abby there and saw the community as a “whole big, huge family.” 16. She says seeing adults with SMA thrive gives parents and kids a clearer model for college, jobs, relationships, and marriage. 17. The couple says they met through conference circles, Instagram, and a message from Savannah after Will posted a singing video. 18. They say dating quickly led to direct talks about caregiving, with Savannah asking how much Will could lift and whether he was willing to take on that role. 19. The episode has a conversational, reflective tone, with both speakers trading stories, laughing about details, and giving practical examples from work, moving, and marriage. 20. People in the SMA community navigating dating, caregiving, and adult roles may connect with this discussion, while listeners wanting a fast-paced medical episode may skip it.

As heard by us

A grounded look at marriage, mobility, work, and the logistics that make ordinary life possible.

Savannah and Will Huff anchor the conversation in marriage, daily life, and the long arc of living with SMA. Savannah's account of growing up with the condition, walking until 19, and later moving into a manual chair and then a power chair gives the discussion its weight.

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Why you'd press play

If you want a candid look at a marriage where SMA shapes the day-to-day, start here.

Read the full recommendation in PlayNext →

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