Episode 20: Alex Goonesinghe - Cornelia de Lange Syndrome

 

Alex is Niko's dad, a 7-year old boy living with Cornelia de Lange Syndrome. In this first interview of a parent on the podcast, we talk about the worry as a parent when the fetus does not develop as expected. Alex shares about Niko's development after birth, the impact of the condition on Niko's body and the level of care they give him to make sure he grows as healthily as possible. We also discuss how Alex and his family communicate with Niko, considering he is non-verbal.

The song Alex selected is Nirvana's interpretation of Where did you sleep last night.

Alex Goonesinghe on LinkedIn

 
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Episode 21: Brooke Eby - Amyotrophic Lateral Sclerosis

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Episode 19: Hawken Miller - Duchenne Muscular Dystrophy