A Medical Journey of Hope and Healing
Welcome to Rylee's medical journey log. This page is dedicated to documenting every step, treatment, and breakthrough in her quest for life-changing gene therapy. We are sharing our process to keep our community informed and to celebrate every victory along the road.
Treatment History
AUGUST 2025
Initial Diagnosis & Genetic Testing
Following Rylee's birth there was a series of events where Rylee would stop breathing and need resucitation efforts in hospital, Extensive testing and procedures were done to try and determine the cause. Part of this was comprehensive genetic screening identified a de novo variant in the FBXO11 gene, marking the start of her medical journey. This changed the entire course of her life as it's a neurodevelopmental condition that will cause her, and has caused her, a variety of medical issues, inablity to develop properly and the future is not certain.
November 2025
Early Intervention Therapy Launch
Rylee began her first physical, SPT and occupational therapy sessions. These early interventions are critical for managing the developmental delays associated with FBXO11 and building her physical strength. She has been doing these weekly with therapists and at home daily. Rylee also has weekly nursing check in and dietician consistently involved for nutrition. Rylee attends many appointments regularly in this journey towards Gene Therapy
JANUARY 2026
Readmitteed to McMaster Childrens Hospital for feeding tube surgery
Rylee was still not able to eat enough or properly and still considered "failure to thrive" so a Gtube surgery was needed that would change her feeding journey completely.
Journey Updates
March 2026 - June 2026
Phase 1: Research and Prep
We meet with and contacted many Genetics Dr's, specialists, hospital, and scientific labs running to do preliminary testing and consultation to confirm viability of a Gene Therapy for Rylee.
June 2026
Testing and Cell line production
Jackson Lab joins the team and begins creating a KOLF2.1J cell line to begin testing cells. Timeline 8 months
www.jax.org
July 2026
Beginning process towards Gene Therapy
The Nuero in Montreal (Mcgill University partner) comes on board and has the ability and resources to begin the road to creating the Gene Therapy for Rylee. Blood work done end of July for them to create an IPSC cell line which is needed to begin testing. Approx timeline 6 months.
www.theneuro.ca
July 2026 and onward
Fundraising efforts commence
After receiving the estimates of work to be done the mountain of a fundraising effort begins so that funds are not a hinderance in moving on to the next steps!
Support the Journey
Canada
Canadians can receive official tax receipts through our dedicated platform.
USA
We have a dedicated link for US residents to ensure proper tax receipting.
Global Support
Our official GoFundMe page remains open for all general contributions.