Sydni Dupre is a young, vibrant entrepreneur who happens to have Friedriech’s ataxia (FA).
Read moreFARA Ambassador Madelyn Frederick, in her own words
I am 24 years old and a Texas native. At 13 years old, I was diagnosed with Friedreich’s Ataxia (FA). I found out that I had hit the genetic jackpot.
Read moreMEET FA'er Emily Rogez
Emily Rogez with mom, Tracy, brother Trey, and his daughters, Paisley and Hannah
Twenty-seven-year-old Emily has lived on her family homestead with her mother, Tracy, and older brother’s family for about a year.
Read moreMEET FA'er Christin Haun
I am Christin Haun from Broken Arrow, Oklahoma, part of the Tulsa metro area. I was diagnosed in 1985, at 14 years old, as having Friedreich's ataxia.
Read moreMEET OUR FA FAMILIES: Taber Elam and His Family
Eighth grader Taber Elam has had quite a journey since 5th grade…
Read moreMEET OUR FAMILIES: Heather Janssen and Her Family
Heather was determined to walk across the stage unassisted to receive her diploma. After having fallen ill during Spring Break, she became more and more unsteady on her feet. Being the independent young woman she is while having had to learn to start asking for help, Heather hatched a plan so she could walk at graduation.
Read moreMEET SILVER SPONSOR AND FA'er Robert Rhodes
My case is atypical and was detected later than normal. As an infant I experienced congestive heart failure and, at the time, it was treated solely as a heart condition. The technology to screen for genetic diseases wasn’t yet available. I developed gait and balance issues in my mid-20s. It wasn't until those were investigated that FA came to light. I was officially diagnosed when I was 31 years old.
Read moreMEET OUR FA FAMILIES: Wes Gates and His Family
Wes Gates, Haggie (service dog), Roger Gates (dad), Robert Beard (nephew), Joe Beard (brother-in- law), Julie Gates (mom), Marie Beard (sister), Aubrie Beard (niece)
SURPRISE diagnosis
Diagnosed at the age of 13 years old, Wes Gates, now 34, has persevered through a string of challenges courtesy of Friedreich’s Ataxia (FA). Wes’ dad, Roger, was serving in the United States Air Force at the time and it was thanks to the medical personnel at Walter Reed Army Medical Center in Washington, D.C. that Wes was tested for FA in March 2001.
FA typically causes muscles to atrophy which in turn allows the spine to bend out of shape. Because of the degenerative effects of progressive scoliosis, Wes had to undergo spinal cord fusion, a major back surgery, soon after receiving his FA diagnosis in May 2001.
courage and perseverance after diagnosis
Wes graduated from Fort Walton Beach High School in 2005 and decided to attend college at Northwest Missouri State University (NWMSU). Although he could still walk without assistance, Wes started using a wheelchair after he fell and broke his shoulder during the second semester of his freshman year. In 2012, after transferring to the University of Oklahoma (OU), he broke his ankle. By the time it healed, Wes had lost the ability to walk on his own. But he persevered, continuing to take classes full time at OU. At NWMSU Wes had originally wanted to be an architect, but as the FA progressed, he changed to Computer Engineering at OU. The handwriting required in the mathematics courses became impossible. After attending college off-again, on-again for eight years, Wes was ready to graduate. OU offered him the opportunity to earn a degree in Multidisciplinary Studies for which he lacked only a few humanities courses. Wes started taking film classes and fell in love with this area of study. In 2013, he graduated with a Bachelor of Science degree with an emphasis in Computer Science thanks to all his math/science credits.
For a time, Wes operated a film review website. An exciting highlight during that time was when a Major League baseball player from his favorite team, the St Louis Cardinals, followed his reviews. After a while, Wes could no longer provide reviews because typing became very difficult for him and eventually even using a voice translator stopped working because of the slurred speech pattern which is typical of FA’ers.
A Cautionary Tale
Since his spine surgery, Wes has suffered from chronic lower back pain and gradually became dependent on narcotic pain medication, despite only taking them as prescribed. These meds turned him into a zombie, always sleeping, and didn’t even relieve the pain; they just made him not care that he was hurting. After medical marijuana was legalized in Oklahoma, he decided to try it and applied for a license. Even with his pain doctor’s assistance with weaning himself off of the pain medications, Wes ended up in the hospital for five days while his body withdrew from the heavy amount of narcotic medication his body had become accustomed to taking for almost ten years. In the end, it was worth it because Wes can now manage his back pain more effectively with 2-3 doses of medical marijuana per day with zero narcotics. He is now more engaged and can better interact with friends and family.
A Typical Day
Wes wakes up early, watches TV shows like Morning Joe to keep up with current events, then streams TV shows or movies to pass the day until his dad gets off work. Thanks to Christin Haun, an FA Ambassador from Broken Arrow, OK who has lived with FA for about 40 years, the Gates family found out that Wes qualified for an OK Department of Human Services (DHS) program that either provides a home aide or pays family members to provide basic care (meal preparation, grooming, house cleaning, etc). As a result, after unsuccessfully being able to find reliable providers through DHS, Wes’ parents, Roger and Julie, perform these services that a home aide would typically provide and receive financial compensation.
The Need to Continuously Adapt
The Gates family converted a detached garage into private quarters with a living room, bedroom, bathroom, and small kitchen for Wes. They also turned the breezeway that once connected the garage to the main house into a room that contains an above-ground safe room for Oklahoma’s springtime ritual.
Going to the bathroom by himself had become a great source of frustration because of difficulty using a urinal. In April 2022, Wes underwent a short procedure to insert a catheter through his abdomen into his bladder. The collection bag only needs to be emptied once a day and his dad will eventually learn to change the catheter tube by himself once a month. So far the procedure has significantly increased Wes’ quality of life.
Wes’ sister, Marie, bought him a red merle border collie puppy for his birthday in July 2020 with the goal of Haggie (named after Merle Haggard, get it?) becoming a service dog in addition to a faithful companion. Because of the Covid pandemic, they had to train Haggie themselves using video teleconferencing with an obedience trainer. Haggie knows important behavioral commands and can pick up dropped items for Wes. They are currently working to train Haggie to press a panic button (Ring doorbell camera) that will automatically call if help is needed.
Thanks to Wes’ ingenuity and computer literacy, he has talked his dad through the challenges of incorporating many adaptive technologies (e.g. Amazon Alexa) in his living area to control lights, door locks, the thermostat, and cameras/temperature control for his medicinal grow tent.
Lessons learned from facing the challenges of FA
Wes states, “Facing the challenges of FA has taught me to be adaptable because if you don’t adapt to the many obstacles, you’ll be miserable all the time. I do get frustrated and angry at times, such as when I drop something repeatedly. Yet, I tell myself that staying frustrated won’t help make it any easier. The current drug trials are for treatments to slow down disease progression, which is great for those just beginning the FA journey. My hope is that research will discover a treatment that can reverse my advanced progression and give me back some self reliance.”
Inspiration and Motivation
Wes experiences renewed motivation when attending FA events. Being around others with FA, who don’t let this disease stop them and who are determined to do the best they can, reminds him that he can do the same.
Favorite Quote
“Never trust a man in a wheelchair with dirty shoes.” ~ Ron Burgundy from Anchorman: The Legend of Ron Burgundy