Hi McDoubles for Rett Players!

Glad you have found Rett Syndrome Research Trust (RSRT)’s new giving page. This incredible organization is dedicated to accelerating research for a cure for Rett Syndrome, a devastating and rare neurological disorder that impacts the lives of 350,000 children (primarily girls) and adults worldwide. Many victims lose their ability to speak, move, and even use their hands, facing daily challenges that most of us can't imagine.

Evie Lotz is our local Rett Hollyburn star, she was born healthy and developed typically as a baby. She learned to use her hands, to babble, and to say words. Then, in early toddlerhood, those abilities gradually disappeared. Today, Rett syndrome affects nearly every system in her body:

• Evie has epilepsy and experiences seizures.

• She has disordered breathing that can swing between breath-holding and hyperventilation.

• She has a significant spinal curve that requires ongoing orthopedic monitoring.

• Her heart rhythm must be checked regularly.

• She has significant gastrointestinal dysfunction and feeding challenges.

• She has no functional hand use and no spoken language.

• Her mobility is severely limited.

And yet, Rett syndrome does not take away who she is.

This year Evie started kindergarten in West Vancouver with all of the other 2020 Covid babies. She arrives each day in her wheelchair, unable to speak or use her hands. She cannot walk and needs support for almost everything. However, in the right environment, with the right people around her, she is fully part of her classroom and school community.

Her teachers have taken the time to truly know her. They’ve learned her communication, her cues, her humor, her preferences. They include her in lessons, routines and friendships. She participates in circle time, activities, celebrations and daily school life alongside her peers.

Evie communicates with her eyes, expressions, and sounds. She laughs easily and often. She seeks people out. She is deeply social and aware of the world around her. Her classmates include her and celebrate her. She brings out empathy, patience and connection in the people around her in a way that is hard to describe until you see it.

What we see every day is that when inclusion is done thoughtfully and intentionally, children like Evie are not limited to the edges of life. They are present in it. Learning, connecting and shaping the community around them. Her life is not empty or passive. It is full, just experienced through a body that does not cooperate with her mind.

This is why Rett syndrome research matters.

Right now, there is no cure and no disease-modifying treatment. Families manage symptoms across neurology, cardiology, orthopedics, gastroenterology, and rehabilitation for a lifetime. But research in gene therapy and related approaches has moved Rett syndrome closer than ever to meaningful treatment.

Evie’s world is richer today because of inclusion.

Her future will be shaped by research.

Thank you for continuing to stand with her and with every child living with Rett syndrome.

Join us in supporting RSRT’s mission for a brighter future.