Meet Elsa Maria
Racing the clock to fund a treatment
About Elsa Maria’s Story
Elsa Maria (aka Elsie) was born in August of 2023, a bright-eyed and sweet little girl, deemed healthy at birth. Five months into her life, her parents started to notice developmental delays and a few other health concerns. The road to a clear diagnosis was long, delayed, and challenging.
Elsie and her family received the most earth-shattering diagnosis of SURF-1 Leigh’s disease just as she turned 20 months old. Leigh’s disease is a progressive neurodegenerative disease that affects the brain, spinal cord, amongst other areas of the body and its functioning. Regular childhood viruses and illness often cause regressions in these children, and these regressions can cause loss of skills, including eating independently, walking, and other gross motor skills.
When Elsie’s parents received her diagnosis in April of 2025, doctors and specialists had told them that there was currently no known cure or treatment for this terminal illness. Eight months later, they learned that a life-saving gene therapy has been specifically developed for SURF-1 Leigh’s disease, and that the only thing standing in the way of their daughter receiving it through a clinical trial is funding.
Time is critical for children with Leigh’s disease. Elsie, amongst other children that are fighting this horrific disease, have so many odds stacked against them. But now, with your help, our extraordinary fighters have a chance to survive – they have a chance to live. Your donations will go directly to the SURF-1 gene therapy project which will fund the formal toxicology report and the manufacturing of the drug.
This curative gene therapy can potentially save these children’s lives, now and in the future. Please help us take this fight to the finish line. If you cannot donate, please share this campaign with as many people as possible, on as many platforms as possible. Thank you for helping us take this all the way home.
