Meet Brooks
Determined
Favorite Things:
+ Swimming
+ Playing with his older siblings
+ Disneyland
Words to Live By:
+ “Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.”
Meet Brooks
My stubborn and determined Brooks
This is Brooks, he was diagnosed with Neonatal Marfan Syndrome when he was 1 years old, and they told us he had infantile Marfan Syndrome which they now group into Neonatal. We first got his diagnosis at 11 months old when we found out his lens had dislocated, and he has surgery to remove them. They did genetic testing, and it came back positive for Marfan Syndrome.
He gets monitored every 6 months for his heart and has an amazing team at BC Childrens Hospital that he also meets with every 6 months. Brooks loves to swim and play with his older siblings; he is also very obsessed with Disneyland!
We have been learning everyday more and more about Neonatal Marfan Syndrome and things are always changing with Brooks and his body. Brooks just got diagnosed with Autism and I find just like Autism is on a spectrum and everyone is different, Marfan Syndrome is also a spectrum and its so very different with each person. #brooksjourney
“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.”
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Dated: 17 February 2025
