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A Race Against Blindness: A Dad's Journey of Inspiration and Resilience Amidst a Rare Diagnosis
Manage episode 408667127 series 3559966
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Stephen Johnston is a father, radiologist, nonprofit founder, and Ironman athlete, who faced his son Luke's life-altering diagnosis with resilience and determination.
At just seven years old, Luke was diagnosed with a rare disease: retinitis pigmentosa and Bardet-Biedl Syndrome (BBS). With no medical intervention available for BBS-related retinitis pigmentosa, Luke faced the prospect of slowly losing his vision, eventually leading to blindness in his teenage years.
Undeterred by the daunting prognosis, Stephen embarked on a mission to save his son's sight. Connecting with a UK-based researcher on the cusp of human clinical trials for a potential treatment, Stephen founded A Race Against Blindness to raise $1 million for sight-saving research.
Through his relentless efforts, Stephen has raised over six figures, garnering attention from major media outlets like GoodMorningAmerica.com and various TV news stations. His story is not just about fundraising; it's about finding purpose in adversity and redefining resilience as a parent.
In this episode, Stephen shares invaluable insights on parenting through tough situations, setting a strong example for your children, and navigating co-parenting post-divorce, especially when faced with unexpected challenges like a serious medical condition.
In this episode we discuss:
Finding Your Purpose Amidst Adversity and Channeling Change: Stephen discusses discovering his passion amidst his son's diagnosis and the complex emotions that accompany finding purpose in difficult situations.
Making a Safe Space for Your Children Through Effective Co-Parenting Post-Divorce: Stephen offers practical tips on co-parenting through adversity, drawing from his experience of re-evaluating priorities and fostering family unity post-diagnosis.
Setting a Strong Example: Modeling a Balance of Strength and Vulnerability for Your Children: Stephen shares how he redefined resilience and vulnerability to become a better parent, inspiring listeners to shift their mindset and embrace challenges.
Parenting a Child Through Tough News: Stephen reflects on communicating difficult diagnoses to children, offering coping strategies and parenting tools to support children through challenging times.
Tune in to gain valuable insights from Stephen's journey and learn how to navigate parenthood with resilience and grace.
Connect with Stephen
Web: https://araceagainstblindness.org
Instagram: dad.vs.blindness and a.race.against.blindness
Youtube: A.Race.Against.Blindness
Connect with Liz
Instagram @motherhoodunstressed
Youtube Motherhood Unstressed
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