UPDATE: A family in Fort Collins, Colorado, is urgently raising $4 million to develop groundbreaking gene therapy for their daughter, Everly Green, and other children trapped in unresponsive bodies. Everly, now 8, has a rare genetic mutation that limits her movement, leaving her to communicate solely through eye movement.
Everly’s journey took a devastating turn when she began experiencing seizures at age 2, leading to significant skill loss and reliance on a feeding tube. Her mother, Chrissy Green, describes the emotional toll, stating, “These kids are in there, they want to play like other kids, they just can’t move.” The family is determined to raise the funds needed to test a potential treatment that could restore some mobility.
The FRRS1L mutation affects communication between brain cells, and only a few dozen children globally have been diagnosed with this rare condition. With little interest from large pharmaceutical companies, families like the Greens are left to fund research independently. “They need massive amounts of money,” warns researcher Neil Hackett, emphasizing the challenges faced by families without business expertise.
Everly is enrolled in a mainstream school and is aware of her surroundings, enjoying social interactions with friends. However, her limitations prevent her from engaging in activities many children take for granted, like holding toys or joining family outings. “She wants to do things she can’t,” Chrissy adds, highlighting the urgent need for effective treatments.
Through collaborations with researchers and small-scale manufacturers, the Greens aim to develop a gene therapy that could replace the faulty gene with a healthy one. Their initial research showed promising results in mice, with significant recovery observed after the gene therapy was administered. “We saw major recovery in the animals, so we’re really hopeful for our kids,” Chrissy said.
As they work towards clinical trials set to begin in September 2026, they must first secure funding for testing and navigate the complexities of FDA approval and insurance coverage. Despite these obstacles, Chrissy remains optimistic, believing that their efforts could pave the way for future gene therapies that benefit other children with similar conditions.
The Finding Hope for FRRS1L foundation is spearheading the fundraising initiative, seeking to support research that could bring life-changing treatments to families in need. “All the diseases can kind of help each other move forward,” Chrissy explains, highlighting the potential ripple effect of their work.
The urgency of this mission is palpable as families rally together to raise awareness and funds. The Greens are not just fighting for Everly; they are advocating for children everywhere who face similar challenges. “We’re determined to change the narrative for our kids,” Chrissy asserts.
As of now, the fundraising campaign is in full swing, and every donation brings them closer to a potential breakthrough that could transform lives. The need for support has never been more critical.
