My first massive spinal surgery at 12 years old consoliidated many experiences of stress and trauma to shape the person I am today. I’ve been a VIP (Very Intensive Patient) at hospitals since I was 10. It’s almost 40 years of watching doctors become professors, growing up with NUH.
I wonder
how many of us bravely plan life in the face of death; it can be empowering or futile to be locked down by physical limitations.
I hope
these posts might help someone else live with MFS a bit longer, a bit better. And we find a way to edit our defective genes so that we can grow up bravely living with our bodies.
I know
it’s been a miracle for me to survive these episodes caused by FBN1 gene mutations; technology has improved so much it’s easier to replace body parts now.
I feel
grateful to the care and love from the people all around me to keep me going stronger this long.
The Marfan One 