“The Dad Who Knows Nothing” talks to Carl and Amanda Robertello about their 2 year-old son, Graham, who was born with a rare skin condition called Epidermolysis Bullosa (EB). EB is a family of life-threatening rare genetic disorders that affect the body’s largest organ: the skin. The discussion centers around their journey as parents and caring for Graham over these last two years, along with how they have risen to this unbelievable challenge in providing him with exceptional care. Finally, we talk about the upcoming “Grateful for Graham” 5K that will be held on Saturday, April 30th, 2022 to raise money and awareness for EB research.
Key Topics
0:00 Introduction
1:10 Beginning of the journey and discovery of Graham having EB
1:40 What is EB?
3:44 Graham makes a Cameo!
4:30 Preventative care is vital for Graham
5:50 How have things changed as he has grown?
9:00 Feedback from treatment resources
11:30 Example of Graham’s resiliency
12:45 Future challenges that Graham will face if a cure is not found
15:20 What their journey has been like as Graham’s parents
21:00 How the “Grateful for Graham” 5K was organized
27:30 Graham get his ‘screen time’
Links from the episode
https://runsignup.com/Race/NY/UTICA/GratefulforGraham5k
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