Do you know someone who lives with a Rare Genetic Condition? Do you live with a Rare Genetic Condition?
In todays episode, Francois is allowing us to ask any and all questions about his son Benjamin and what life looks like for them, with their son Ben, living with CASK MICPCH (ponto cerebeller hypoplasia)
What we learned about in this episode that was mind boggling? There are less than 200 people living with this condition and most males who are born with this condition, die during infancy. Ben is one of the only known males who has currently made it to the age of 17.
Listening to Francois share about Ben was an incredible experience. Ben is full of energy, laughs and the biggest smile and he gets to go on some incredible adventures with his family.
Tune in to learn more about Ben and CASK MICPCH (ponto cerebeller hypoplasia)With love,
Melissa & Sammi
