In July of 2024, we held the first local fundraiser for our grandson Cade Franco Jobsis in order to help raise money so that he could receive an experimental gene therapy treatment. Cade was born with Hereditary Spastic Paraplegia 50 (SPG50 or AP-4 Disorder), a genetic disorder that caused him to have developmental delays in all areas, from learning language to sitting up and, later, walking. On April 1 he received that gene therapy at the University of Texas Southwestern, thanks to the support Cade and his family received from many, many people and local businesses.
Cade, who was born on St. Thomas but now lives in Juneau, AK, was diagnosed in August of 2023, so this has been a long journey for him and for us. And he received tremendously generous support from both communities, with St. Thomas fundraisers hosted by Roots Garden Lounge at Tillet Garden, and Coral World, where his mom Emma Jobsis (then Landvatter) was first an intern and then a marine mammal trainer.
Cade’s father, Dylan Jobsis, grew up on St. Thomas and graduated from Antilles High School and UVI. Before leaving St. Thomas, he worked as the tech manager for Virgin Islands Montessori and International Academy (VIMSIA). He is now employed as a Systems Admin at the Bartlett Regional Hospital in Juneau. Emma is both a full-time mom and coaches gymnastics at Southeast Alaska Gymnastics. Cade is surrounded by the love of his brother Cosmo, many cousins, aunties and uncles, and his maternal grandmother. His paternal grandparents, Paul Jobsis and Rosalyn Rossignol, trek to visit Cade in Juneau once a year, but we FaceTime regularly to keep the family close.
Again, we cannot fully express how grateful we are to everyone who participated in a fundraiser, donated to CureforCade, watched, commented and/or shared a post on social media. All of these things mattered. People who want to know more about Cade’s continuing journey (or to see videos from his journey over the past 3 years), can find these on Facebook, Instagram and TikTok at CureforCade.
