Declan is 7 years old.

Our journey started when he was born. He was in the NICU for respiratory distress.

He had an ECHO done, and we found out he has a bicuspid aortic valve. I was also told he had hypotonia or what they referred to as "floppy baby." At 4 months old, he was diagnosed with failure to thrive and had his 1st of many panels of genetic testing done.

Every time we went to the doctor after this, it seemed like we were getting another new diagnosis added to his list. He has always had feeding issues and got his g-tube placed at 9 months old because he absolutely refused to eat. He started having seizures at 18 months old.

He is such a happy boy who LOVES all things water and would live in the water if I would allow it.

He loves to play with anything that spins, lights up, and makes noise. He's a big fan of guitars. He loves plants/trees and loves to be outside. He loves school and riding the bus.

This has been a long journey, but it's comforting to have a name and be able to connect with other families going through a lot of the same things.