Ema’s Journey: A Family’s Fight for Rett Syndrome Awareness in Manitoba
When you’re a parent, you just know when something isn’t right.
For Trish Guimond, that instinct led to years of searching for answers for her youngest daughter, Ema. What followed was a story of persistence, hope, and the power of advocating for your family.
Meet Ema
Ema is a vibrant teenager with a calming presence. Although she has Rett syndrome, her condition by far doesn’t define her. She goes to a local high school to continue her education and has the interests of any 17-year-old: a love for comedies (especially The Simpsons), music, and swimming.
Ema lives with Rett syndrome, a rare neurological and genetic disorder caused by changes in the MECP2 gene. Though her condition has left her unable to speak, that doesn’t stop her from clearly communicating how she feels with unwavering honesty.
When you meet her, Ema easily shows if she is interested in the conversation, turning or walking away when she dislikes the topic. When you do find a common interest, her attentive, friendly gaze reflects her mood and interest. And, when given a couple of extra seconds, she uses her iPad equipped with an AAC app to reply. One of the key phrases Ema has ready to go on her iPad is “Too much coffee,” telling her family they have drunk enough.
A Long Road to Answers
Before Ema turned one, Trish noticed she wasn’t meeting milestones. Over the years, there were changes in her speech, seizures, and other symptoms that didn’t quite fit her initial diagnoses.
It wasn’t until nearly age five that genetic testing confirmed Rett syndrome.
Their full journey is powerful and deeply personal. You can watch the video of Trish’s interview to hear the entire story in her own words.
Caring for Ema is a full-time job. She needs support with eating, mobility, and managing seizures, yet she continues to learn and connect thanks to AAC tools and the dedication of those around her.
Rett syndrome can be unpredictable. Families often see periods of progress followed by unexpected setbacks.
Finding Strength in Community
When Trish first received the diagnosis, she was handed a single sheet of paper and sent home. That moment pushed her to find the Manitoba Rett Syndrome Association (MRSA), where she now serves as president.
MRSA supports families through education, peer connections, advocacy, and events like the Ride or Stride walk.
Why Awareness Matters
Rett syndrome may be rare, but awareness changes lives. In Manitoba, there are likely more families affected than the numbers show, simply because many remain undiagnosed.
Public awareness and physician education can help change that.
Lessons from the Journey
Seventeen years in, Trish says Ema has taught her patience, perspective, and the value of slowing down. “People who don’t take the time to know her,” she says, “are the ones missing out on an unbelievable individual.” Anyone who takes the time to get to know Ema would agree.
How You Can Help
Learn more at rettsyndrome.mb.ca
Join the Ride or Stride walk this fall for a day of awareness, connection, and fundraising
Share posts with #MBRett and #pRETTyAwesome to spread the word
Together, we can create a Manitoba where every person with Rett syndrome is seen, understood, and celebrated.