After a textbook pregnancy, Meredith Bugenske learned her newborn son had a life-limiting, incurable condition called SMA type 1. When her community began fundraising to provide baby Leo with an accessible van, Meredith hesitated; doctors didn't expect him to live long enough to make use of It.
Despite his team's initial prognosis, Leo will be seven in less than two weeks. With the help of his family's advocacy and his mastery of eye-tracking technology, Leo is now a wise-cracking first grader and older brother times two. He loves long runs, being captain of the Chapin High cross country team, and navigating to Netflix on his tablet.
That first fundraiser for the baby with an uncertain future grew into a foundation, one that has provides accessible transportation for families with special needs and inclusive play places for everyone to enjoy.
In today's episode, Meredith shares her family's story, including how her family grew despite the looming possibility of a genetic disorder. She encourages us to find the joy in whatever we face, admits that the slow pace of 2020 has been more sweet than bitter, and urges communities to open their minds, classrooms and playgrounds to children of every type.
Learn more about the upcoming virtual and in-person race benefiting Leo's Pride by visiting leospride.org/go-leo-go, fb.com/leospridefoundation, or @leospridefoundation on Instagram.
As always, you can join the conversation at @butnotallatonce or email me directly at butnotallatonce@gmail.com.
Thanks for being here, y'all! I'd love your thoughts, questions, ideas, and everything in between. You can find me at @ButNotAllAtOnce on social media or ButNotAllAtOnce.com.
For extra content, additional episodes, and upcoming details about possible 2023 in-person events, visit Patreon.