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At Santhera, we have a set of core values that guide our decisions and actions every day: Commitment, Passion, Respect, Collaboration, and Accountability. And while we strive to infuse those values into all our efforts, nothing illustrates them greater than these stories of living with rare diseases.
Santhera partnered with the organization Living in the Light to highlight nine individuals who allowed us an intimate view of their challenges, successes, hopes, and dreams. Reading their stories, we hope to give them a sense that they are not alone and that Santhera will continue to work hard for them, to share their stories, and to help raise awareness of each disease in which we work to develop treatments. These stories provide the compass for our work.
“I’m definitely grateful for everything I have. There are a lot of things I can’t do, but there are so many things that I can.”
Anthony maneuvers himself down the ramp behind his family’s suburban home, which is surrounded by sprawling acres of picturesque New England farmland. The sun is beginning to set, but it is unusually hot for an afternoon in May—too hot for Anthony to spend much time outside because sweating bothers him. Click here to meet Anthony.
“I want to be as independent as possible, while I still can.”
Tayjus lives with Duchenne muscular dystrophy (DMD), a genetically inherited disorder characterized by the progressive degeneration of muscles. Boys who are diagnosed with DMD appear to be born with normal muscular function, but soon lose their strength, beginning in their legs. Tayjus was diagnosed when he was five. Click here to meet Tayjus.
“My main focus is to create more adaptive, accessible, universal, and barrier-free designs."
The pursuit of barrier-free and universal design has become both a necessity and a passion for Jason. A wheelchair user since the age of 11, he lives in a world where solutions to his needs around mobility are rarely well-developed. Harnessing the ability to redesign buildings and devices is a tangible route toward empowerment for the aspiring draft architect—transforming hardship into constructive acts. Read about Jason's life here.
“...what guides me is always maintaining a positive attitude...
...and remembering that my disability can be my greatest ability," Siddharth says.
His story is full of inspiration for young men with the disease, who undoubtedly hold similar aspirations and capabilities. For Siddharth, realizations about his condition came with his diminishing physical abilities. “I gained an understanding of it a few years later, when I started to see that there were a number of things I could not do at the pace of other kids.” He struggled to make friends and found himself socially isolated. Read more about Siddharth and his ambitions here.
“...I want to make a difference in the world—not just for me—but for others with Duchenne.”
Months of genetic testing revealed that Kyle had been born with DMD and he and his family began to cope with the facts of the terminal condition, which still has no cure. Dishearteningly, Kyle accepted that he would no longer be able to play sports, or so he thought. Read more about Kyle's life here.
"Come on! Let’s play,” exclaims Olivia.
“Olivia is unique because she is so verbal,” reflects Sara [Olivia's mother]. “Olivia speaks up. We do this for Olivia and for all the other kids too.” Furthering her knack for civic engagement, Olivia helped redesign a playground in her neighborhood. Managing Olivia’s medical needs have also proved challenging. “We are lacking an integrated team,” explains Matt [Olivia's father]. Read more about Olivia and her family here.