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 ...
Elijah's Baby Bucket List: Finding Joy Through Accessible Travel
Life to the Max Podcast
11 minutes
1 month ago
Elijah's Baby Bucket List: Finding Joy Through Accessible Travel
Amy Tarpein's world changed forever when doctors told her that her eight-month-old son Elijah, diagnosed with an extremely rare brain malformation called Lissencephaly, wouldn't live to see his second birthday. Instead of shrinking from this devastating news, this remarkable single mother of ten made a life-altering decision: if her son's time was limited, she would fill it with as many experiences as possible. What began as a mother's determination to create beautiful memories transformed i...
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 ...
