Parker was diagnosed in the NICU with CHARGE Syndrome. It’s been a long journey, filled with many twists and turns leading me to variety of families in New York (and beyond!), that I call my “tribe”. Having my family meet other families, as well as adults with charge have been a life changer. Connecting to the foundation, attending charge conferences, and educating myself on what my son needs (as well as others) has directly impacted his ability to thrive and succeed. My journey with Charge Syndrome has catapulted me into a path I never thought I would be in, and I am grateful for every piece of it.
What would you like people to know about CHARGE syndrome?
It is a very varied diagnosis, it is not textbook, every individual with charge is unique. They might have challenges, but those challenges do not define them. With the right access and supports individuals with Charge Syndrome can thrive, succeed, at their own time, pace, and ability. They might have limitations, but always have high expectations. Embrace every piece of their imperfections. The best way to work with a child with Charge Syndrome is to understand and educate what it is, connect with the right resources & information, and make sure that families and individual with CHARGE are always included. On my eyes CHARGE stands for the textbook acronym, but stands for Compassion, Headstrong, Ambitious, Resilient, Genuine, Extraordinary (I also could say Exhausting….(sometimes) 馃槈
