URGENT UPDATE: A family in Fort Collins, Colorado, is racing against time to raise $4 million for a groundbreaking gene therapy that could transform the life of their daughter, Everly Green, who has been trapped in a body she cannot control since the age of 2. Everly, now 8 years old, suffers from a rare genetic mutation known as FRRS1L, which inhibits her ability to move and communicate beyond eye movement.
The Green family’s desperate situation has garnered attention as they work tirelessly to fund the next stage of drug development. Following a devastating decline in Everly’s health, marked by seizures and loss of motor skills, her parents are determined to find a solution that could allow her to regain movement and independence.
“We’ve seen major recovery in mice treated with the therapy, giving us hope for our kids,” said Chrissy Green, Everly’s mother and co-president of the foundation Finding Hope for FRRS1L. The foundation is mobilizing support from the community to fund critical research at the University of Texas Southwestern Medical Center.
Everly’s journey began with a series of alarming health milestones. Initially hitting her developmental targets, she fell behind by 18 months, and by age 2, she required a feeding tube. The heartbreaking reality that “these kids are in there, they want to play like other kids, they just can’t move” is what drives Chrissy and other parents in the same situation to seek new treatments.
Currently, only a handful of children worldwide share Everly’s specific genetic disorder, making it difficult to attract interest from pharmaceutical companies. With limited market potential, families are left to fend for themselves in funding research. “They need specific expertise, which is not easy to find, and they need massive amounts of money,” explained Neil Hackett, a researcher advising the foundation.
The gene therapy aims to replace Everly’s faulty gene using a harmless virus to insert healthy genetic material. If successful, the treatment could start clinical trials as early as September 2025. However, the path is fraught with challenges, including the need to demonstrate safety and effectiveness to the U.S. Food and Drug Administration (FDA) and to convince insurance companies to cover the costs.
The emotional toll on the Green family is immense. Chrissy recalls a doctor once urging them to make the most of their time with Everly, as traditional medicine offered little hope. However, through a network of parents, including a mother in London searching for potential treatments, the Greens discovered promising avenues for gene therapy.
The Greens’ foundation has already raised $400,000 to fund initial studies, including successful tests on genetically modified mice. Yet, as they push forward, the battle for funding and regulatory approval looms large. “Even with a successful treatment, we face hurdles with insurers and the FDA,” Chrissy noted.
With the clock ticking, the Green family remains optimistic that their efforts will not only aid Everly but will pave the way for future therapies for children battling similar conditions. “All the diseases can kind of help each other move forward,” Chrissy stated, reflecting a glimmer of hope amidst the challenges.
As the situation develops, the need for urgent support from the community has never been greater. Families like the Greens are taking a stand, turning their love for their children into a powerful movement for change. Every contribution brings them closer to a breakthrough that could alter the course of Everly’s life and countless others.
Stay tuned for updates as the Green family continues their fight for a brighter future.
