A toddler from Salem, Oregon, named Lily Etherton recently underwent life-changing surgery to correct her droopy eyelids, a condition she was born with known as blepharophimosis ptosis epicanthus inversus syndrome (BPES). This condition made it difficult for Lily to fully open her eyes, leading to frequent falls and bumps as she learned to walk. Concerned about her physical development and potential vision impairment, Lily’s parents decided she needed surgery to lift her eyelids. They consulted with Dr. Ramon Medel, an orbital and lacrimal surgery specialist in Spain, who offered to perform a non-FDA approved surgery to help correct Lily’s vision issues.
The surgery, which was not covered by insurance, cost tens of thousands of dollars, leading the Etherton family to fundraise for the procedure. Lily’s mother, Ashley Etherton, spent 40 hours a week for four months fundraising through dessert sales, benefit raffles, and sharing her daughter’s story with the community. Through their efforts, they raised roughly $32,000, enough to cover the surgery, flights to Spain, hotel accommodations, and other expenses. The surgery was successful, and Lily is now described as being “sassier, sillier, and more energetic” by her mother. Ashley plans to use the remaining funds to assist Dr. Medel in seeking FDA approval for the surgery.
After the surgery, Ashley shared on social media about Lily’s improved eyesight and how the procedure had made it possible for her daughter to see the world as others do. Lily’s parents felt relieved that the surgery had preserved her vision, which was their primary goal. They expressed gratitude for the support of their community in helping them raise the necessary funds for the life-changing procedure. The Ethertons hope that by sharing Lily’s story, they can raise awareness about BPES and the challenges faced by children with similar conditions, as well as support Dr. Medel in his efforts to seek FDA approval for the surgery he performed on Lily.
The Etherton family’s journey highlights the impact that a congenital condition like BPES can have on a child’s development and quality of life. Through their perseverance and determination, they were able to access a specialized surgery that significantly improved Lily’s eyesight and overall well-being. The success of the surgery has brought hope to the family and inspired them to continue advocating for others facing similar challenges. By sharing their story, they aim to raise awareness, support further research and innovation in the field of ophthalmology, and help other families navigate the complexities of rare genetic disorders like BPES. Lily’s journey serves as a testament to the power of community support, resilience, and the transformative impact of modern medical advancements in improving the lives of children with unique medical needs.
