MWS and Me

The most important thing I want people to understand about me is that I am a complete person with an incredible amount of abililty, despite the challenges of disability from Mowat-Wilson Syndrome.

 

MWS is a genetic anomaly that affects my life in many ways. My coordination and movements are slower, and sometimes awkward. I have limited use of my hands. Sometimes it takes me longer to process information. I understand language, but my “speech” can be cryptic because I don’t use full sentences when I point to icons and words. I have difficulty following through on complex tasks. I need a wide range of assistance – from a little to a lot in just about everything I do. So, despite all this, how do I perceive my life? To be honest, some days I’m on, and some day’s I’m off. I live in my own apartment and am assisted by a team of terrific staff, 24/7. I have a sense of humor, along with love and compassion for friends, and only a few things really get me angry. I pursue lifelong learning and adventure. I work hard to be successful in fulfilling my dreams like my passion for music. With all that, life is good and I’m living it to the max.

 

MOWAT-WILSON SYNDROME (MWS) - A Brief Overview

People with this syndrome look like each other. We are a tribe that shares a wide range of physical anomalies and intellectual challenges from mild to severe. Some of the challenges include anomalies in our neurological functioning like seizures, cerebral palsy, developmental delay, and agenesis of the corpus collosum (the bundles of nerves that link the left and right hemisphere of the brain) and more, all of which can affect our motor planning and coordination. Many of us take a longer time to reach developmental milestones like walking and communicating.

 

To find out how MWS affects my life, check out the other tabs under MWS.

 

Learn more about Mowat-Wilson Syndrome at www.mowat-wilson.org