From First Diagnoses to a Manitoba Movement: The Founders Look Back

What happens when a few Manitoba parents refuse to accept silence as an answer? They find one another at a conference in Saskatchewan which sparked the creation of the Manitoba Rett Syndrome Association.

Today, it’s still changing lives.

The early days: scarce answers, strong instincts

In the 1980s and 90s, information was hard to find, and hope was even harder. As one founding mom shared, “There wasn’t much about Rett syndrome, and what there was wasn’t very good. I’d say 90% of the doctors had never heard about it.” Without today’s genetic testing, families relied on clinical signs and community breadcrumbs. One mother remembers being handed a VCR tape: “I watched it and I knew. The way [the girl in the video] walked, the way she did her hands… it was like I was looking at my daughter with a slightly different face.”

When their daughters began showing the signs of Rett syndrome, doctors didn’t have the answers. With no roadmap to follow, these parents created one themselves. They compared notes, shared resources, and travelled to clinics so their girls could be seen by specialists. “For a small group of people, really three families and our extended family, we did an awful lot of work.”

Early care and misguidance

Back then, well-meaning therapies sometimes missed the mark. Things like splints, jackets, and rigid goals aimed to “stop” Rett-typical movements were the typical route. One parent said it plainly: “The goal was to stop the hand-wringing, but you’re not going to stop it. We had to work around it… ’ We just took it all away after because she just fought it… In her elbow splints, she just bent the metal to bring her arms back up the way she wanted them. There was no point. The more you splinted her, the more she tried to fight it.” Over time, the focus shifted to comfort, communication, and dignity, which made the biggest difference in day-to-day life.

School, adulthood, and the cliff edge of services

If you’ve felt support thin out as your child grows, you’re not alone. Families often express frustration that even when funding is promised, it can take months—or years—before those resources translate into the therapies, equipment, or supports their child urgently needs. "There's no guarantee that the funding is actually spent on that individual that it's given for."

“Apparently, after adulthood, Rett syndrome doesn’t exist,” one parent quipped, only half joking. Families described fighting for one-on-one support, piecing together after-school programs, and advocating for the rights of their daughters.

One Mom reflected on a time her group home left her in the hospital with no one there by her side. When she called her daughter’s group home about the event. “She was in the hospital by herself… ‘That’s what they have [hospital staff] for,’ they told me. I said, ‘I don’t pay the hospital staff. We pay you to look after her.’”

Every person is different and absolutely present

Rett syndrome doesn’t erase personality. It amplifies it in quieter ways. The founders smiled about big hearts, big humour—and yes—big flirts. They also reminded us that abilities vary widely: some girls walk for years, some never do. Some use eye-gaze for everything. One mom said, “Walking was Melanie’s biggest form of communication. When she lost her walking, she lost her major form of communication.” Another added, “If you don’t treat her with respect or you speak around her, she just hangs her head and tunes out.”

And the most important truth? “The girls are in there, completely. They just can’t always get it out for the rest of the world to see.”

Hope that grows up with you

Decisions about new treatments, therapies, and trials are deeply personal. Some founders said they’d be eager if their child were young. Others felt their adult daughters were stable and comfortable and didn’t want to risk setbacks. What united them was compassion for families just starting out, and a steady joy that has weathered decades. “You find joy in the smallest things. You must take it day by day.”

Why Manitoba Rett exists

From those first living-room meetings to today, MRSA connects families, shares practical tools, and stands beside you in the advocacy trenches. Because no one should have to navigate Rett syndrome alone.

What you can do next

• Meet other families at our next community event, the Ride/Stride walk!

• Need a hand or a listening ear? Reach us at rettsyndrome.mb.ca, info@rettsyndrome.mb.ca, or (204) 770-0210.

• Want to help? Volunteer, donate, or share this story using #MBRett and #pRETTyAwesome.