UPDATE: A family in Fort Collins, Colorado, is urgently raising $4 million to fund a groundbreaking gene therapy trial that could provide crucial mobility to their 8-year-old daughter, Everly Green, who is currently trapped in a body she cannot move. The family is rallying support as they aim to transform Everly’s life, which has been drastically impacted by a rare genetic condition.
At just 18 months, Everly was meeting her developmental milestones, but by the age of 2 she began experiencing debilitating seizures that led to the loss of critical skills. Now, at 8 years old, Everly can only communicate through eye movements, relying on a feeding tube for nourishment.
Everly has a rare mutation in the FRRS1L gene, which disrupts communication between brain cells. As her mother, Chrissy Green, explains, “These kids are in there, they want to play like other kids, they just can’t move.” The urgency to develop a treatment stems from the understanding that only a handful of children worldwide have this condition, which has left families with little support from pharmaceutical companies.
Chrissy Green co-leads the foundation Finding Hope for FRRS1L, dedicated to raising funds for the next phase of drug development. The foundation is working with researchers at the University of Texas Southwestern Medical Center to explore gene therapy that has shown promise in animal studies, with initial trials scheduled to start in September 2025.
Everly loves attending school and has formed strong friendships, yet her condition limits her ability to engage fully in activities that many children take for granted. Chrissy shared, “She wants to hold toys on her own or go on family trips with her brothers, but she can’t.” The emotional weight of this reality fuels the family’s determination to raise the necessary funds.
The proposed gene therapy involves replacing the faulty FRRS1L gene using a harmless virus, a method that has successfully treated other conditions, including severe immune deficiencies. However, the path to approval is challenging. With only a few dozen known cases globally, pharmaceutical interest is minimal, leaving families to finance the research themselves.
Neil Hackett, a researcher involved with gene therapies, emphasized the significant hurdles these families face. “They need specific expertise, which is not easy to find, and they need massive amounts of money,” he stated. The complexities of navigating the FDA approval process and securing insurance coverage add further layers of difficulty.
Despite the challenges, the Green family remains hopeful. Previous animal trials have demonstrated promising results, with treated mice showing near-normal movement. Chrissy Green expressed optimism, stating, “We saw major recovery in the animals, so we’re really hopeful for our kids.”
The next steps hinge on raising sufficient funds to continue research and testing for potential side effects before entering human trials. If successful, this could pave the way for not only helping Everly but also providing a blueprint for future gene therapies for similar conditions.
As the campaign gains momentum, the urgency to share this story is paramount. Families facing similar struggles are encouraged to support the Green family’s mission and spread awareness about the plight of children with rare genetic disorders. Every contribution counts in the race against time to transform lives and offer hope to these resilient children.
For those interested in supporting the cause, donations can be made through the Finding Hope for FRRS1L foundation’s website.
