Nathan's Story

Images Captured by Studio 9 Photographics

Meet Nathan. This Tiny Light loves his toys and is always laughing and smiling. Nathan was born with Trisomy 17, a rare genetic disorder.

Nathan has an aunt with the same condition, but his family is still unsure what to expect, as Trisomy 17 can mean very different things from person to person. His condition was not detected until a late ultrasound, between 34 and 36 weeks.  

Nathan has hydrocephalus, a build-up of fluid around the brain, which results in brain swelling. Surgery was performed to put a shunt in when he was only 20 days old, but the shunt stopped working so a second surgery had to be done only three months later. These are just two of the several surgeries Nathan has already had. He is expected to need 14–16 surgeries before he is two. Right now his shunt is again not working, which means he’ll need another surgery soon.  

While Nathan’s mom was upset that nothing had been detected at her 20-week ultrasound, she wouldn’t change a thing. “He’s an amazing little guy!” She hopes that having a sister with the same condition with prepare her for how life will be for Nathan. More than anything she just hopes that he will stay a happy, strong and loving boy!

Story by Angela Stephen-Dewhurst