Rescue7.org From the Abilities Expo in Chicago we're with Frank, a dad navigating a nanorare KIF1A diagnosis and a journey that rewrote his family’s map. What began with early toe-walking and questions about spasticity became a lesson in timing, persistence, and the power of genetic testing. A newly opened panel in Milwaukee delivered the clarity they needed, shifting the focus from guesswork to action. Frank walks us through the care plan that followed: The goal isn’t perfection—it’s ...
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Rescue7.org From the Abilities Expo in Chicago we're with Frank, a dad navigating a nanorare KIF1A diagnosis and a journey that rewrote his family’s map. What began with early toe-walking and questions about spasticity became a lesson in timing, persistence, and the power of genetic testing. A newly opened panel in Milwaukee delivered the clarity they needed, shifting the focus from guesswork to action. Frank walks us through the care plan that followed: The goal isn’t perfection—it’s ...
Life Beyond the LTV: Two Ventilator Users Share Their Journey
Life to the Max Podcast
7 minutes
1 month ago
Life Beyond the LTV: Two Ventilator Users Share Their Journey
Chance encounters can create the most powerful connections. When the Quadfather met Sabeeh at the Abilities Expo in Schaumburg, their shared experience as ventilator users instantly created a bond that transcends the typical podcast conversation. "We've got stories to tell," says the Quadfather early in their exchange—and indeed they do. Sabeeh, at 35, reveals her lifelong journey with a rare genetic condition called PAX7 gene, a form of congenital myopathy that has required ventilator suppo...
Life to the Max Podcast
Rescue7.org From the Abilities Expo in Chicago we're with Frank, a dad navigating a nanorare KIF1A diagnosis and a journey that rewrote his family’s map. What began with early toe-walking and questions about spasticity became a lesson in timing, persistence, and the power of genetic testing. A newly opened panel in Milwaukee delivered the clarity they needed, shifting the focus from guesswork to action. Frank walks us through the care plan that followed: The goal isn’t perfection—it’s ...
