A Disorder that spares nonE IN THE FAMILY
Sydni Dupre is a young, vibrant entrepreneur who happens to have Friedriech’s ataxia (FA). Her brother Sam, who is five years older, also suffers from the same disorder. Both Sam and Sydni have followed about the same timeline for onset and progression.
Six years old, began having some trouble walking and running; noticed clumsiness playing sports.
Ten years old, official diagnosis.
Fifteen years old, started needing a wheelchair.
Twenty years old, no longer able to transfer from wheelchair on their own.
Sydni, left, with sister, Courtney, and brother, Sam
After Sydni was diagnosed with FA, her sister, Courtney, ten years older than Sydni, tested and found out that she carries one copy of the gene that causes FA. She won’t develop FA but any children have a 25% risk of carrying both copies of the defective gene if the father also carries a copy. So when Courtney got married and her husband found out that he is a carrier, they decided not to have children.
Sydni with her husband Tony and their two French bulldogs
How did Sydni meet HER husband?
Sydni and her husband, Tony, became friends after meeting at a college party. Soon afterward, they started dating and after a year moved in together.
Sydni recounted how nervous she was the first time Tony came over to her house. Knowing that she would be fully wheelchair-bound like her brother within five years, she was nervous for her first boyfriend to witness this. After meeting her brother, she asked Tony what he thought of that eventuality. His answer, “That’s not a problem.” Shocking knowing that he had never been around people with disabilities before they started dating!
After getting to know Sydni, it’s no surprise to hear that she proposed to Tony by creating an escape room in their apartment. Despite his shyness, Tony was fully aware of the courage needed to be dating and still said yes to marrying someone with a progressive disease. Watch a reenactment on Sydni’s YouTube channel where she shares what it’s like to live with FA from her perspective and others in the FA community. She has learned not to let fear get in the way of what she wants.
Because Sydni got a tubal ligation to ensure she would not pass this disease to any children, Tony has not gotten tested for FA. Living with FA probably means that Sydni and Tony won’t even be able to adopt children. They are both content to just adopting dogs. Sydni was so happy when they adopted her dream dogs, two French bulldogs, a year apart. Despite how loud they snore, she wouldn’t have it any other way. Each one is a polar opposite of the other. Foe example, one can easily jump on the countertops whereas the other can’t even jump on the couch:) They inject a lot of fun into their day-to-day.
Does last year's approval by the FDA for the first drug therapy to treat FA and other FARA-sponsored studies and trials give hope?
Thanks to the Friedreich’s Ataxia Research Alliance (FARA), last year Skyclarys became the first FDA-approved drug in the U.S. for individuals with FA 16 years and older. It was also recently approved by the European Commission.
For a short time in 2018, Sydni participated in Skyclarys’ clinical trial until she developed a bad reaction and broke out in hives. She hopes to try it again but will not be eligible until six months after she finishes a different clinical trial, which will be in another five years. In the meantime, her brother Sam is in the process of getting a Skyclarys prescription with the hope that it will slow down the disease’s progression.
ADAPTATIONS FOR LIVING A LIFE WITH FA
Sydni was very fortunate to win a very special powered wheelchair which, as Sydni puts it, “gives Transformer vibes.” Sydni connected with Chive Charities, a non-profit dedicated to supporting underserved veterans, military families, first responders, and rare medical diagnosees with life-changing grants. Via a flash campaign, she “won” an iBOT personal mobility device from Mobius Mobility. Since then she has partnered with both Chive and Mobius to bring wheelchair accessible vans and mobility devices to others in need via her social media platforms.
Besides needing a powered wheelchair, Sydni and Tony live in an ADA-compliant apartment designed with sinks to roll under, a shower chair, grab bars and outlets that are within reach by someone in a wheelchair.
A SOCIAL MEDIA MAVEN
Quickly immersing herself in social media and leveraging how it can help share stories and earn a living, Sydni works full time creating content for YouTube, TikTok, Instagram and Facebook. Producing videos requires a lot of time setting up production, lighting, filming, and editing. Sydni’s main goal is to share her life with the world by providing glimpses into what it looks like living with FA.
For about four years, she has made a living from social media with modeling gigs, brand sponsorships, product placement in her social media posts, videos and pics. The more views she gets, the more income she earns. Sydni is also social media manager and digital marketing consultant for a variety of clients. And, if that’s not enough, she also runs an online merchandise store.
AT FIRST SCARED BUT NOW VERY BRAVE
At 19 years old, Sydni was very embarrassed about her disability. It took some time to accept and own being different. Since then it has become her passion to show how we all share challenges, fears, wins and losses. In all her endeavors, she finds ways to promote brands and products that improve the lives of people with disabilities and are more accessible; she tries to show the fun side of things and make things more personal.
About a year ago, Sydni became a FARA Ambassador, one of many people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more. Becoming an ambassador was a natural by-product of her passion to share her life with FA. She is part of FARA’s social media team and leads FA hangouts (Zoom club that meets monthly for FAers). She felt the positive effects of getting to know the FA community after feeling disconnected for so many years. After Michael Gehr, FAer and co-founder of the annual Cure FA Soirée six years ago, saw one of Sydni’s social media posts, he invited her to attend her first Cure FA Soirée in 2021. This event made her instantly feel that needed connection and it keeps growing every time she attends. Becoming a FARA Ambassador fulfills her need to bring in more FAers, newly diagnosed and veterans, into the fold of this very connected community.
INSPIRED TO KEEP MOVING
Very aware that her disability is progressing, Sydni will live life to its fullest at every stage. She loves her little family and embraces the life they are building. In the meantime, she continues to enjoy fashion and makeup, going out and traveling, and, of course, social media. What started off as a hobby, is now more than a job…it’s a mission.
Please follow Sydni Dupre | Lifestyle, Fashion, Travel & Everything In Between | Raising Awareness for Friedreich’s Ataxia on: Instagram, Facebook (http://www.facebook.com/sydni.dupre), TikTok, and YouTube.