Ema was born in December 2008 in Winnipeg Manitoba Canada. She is the youngest of 5 children. She has a micro-deletion on the 22.33 gene and has been diagnosed with having atypical Rett Syndrome with a unique MECP2 gene deletion. What we didn’t know when Ema was born was how she was going to change our lives forever
I (Trish) and a stay-at-home mom of 5 children. Our youngest daughter Ema, who was born December 30, 2008 was diagnose on October 15, 2013 with the rare neurological disease known as RETT SYNDROME. Our life has never been the same. She has taught us how to really live. We were missing out on so much. Ema opened our eyes to the world.
I grew up on a farm outside of Miami Manitoba Canada, with my mom, dad and sister. I moved to the “big” city of Winnipeg after high school, so I could attend college. After getting married, Lionel and I briefly lived in Estevan SK for a year, but returned to Manitoba. We bought a home in Oak Bluff Manitoba and have remained there for the past 17 years.
I am part of EYES on EMA, (Facebook page) a charity set up by our family, in our daughter's name, to help other families and raise awareness for Rett syndrome, mental health issues and other special needs. I am also part of the Manitoba Rett Syndrome Association www.rettsyndrome.mb.ca
Hi! We also live in Winnipeg,MB. My daughter Taylor has RS and just turned 21 yrs old a few days ago (May 5). She is atypical and continues to walk. She recently received a Tobii eye gaze device and is doing quite well!