Wyburn-Mason Syndrome, also referred to as Bonnet-Dechaume-Blanc syndrome is a rare nonhereditary congenital disorder. It has no known racial or biological sex predilection.  This indicates that most patients are born with this condition and that no influencing gene is present. The conditon is characterized by arteriovenous malformations (AVMS) affecting the brain, retina, and facial structures. AVMS are abnormal connections between arteries and veins, typically bypassing normal capillary networks. 

Information provided by National Institute of Health

Courtesy of the National Organization for Rare Diseases, Sydney Collier has provided her story in dealing with this condition. 

IN 2004, at the young age of seven, Sydney was told by doctors that it was a miracle she was even alive. An MRI Scan had discovered an AVM behind her right eye and another in the brain. After this, she had been given the preliminary diagnosis of Wyburn Mason Syndrome. Her case is the only known one of a patient receiving it during childhood, for most are diagnosed during infancy by physicians. 

In 2008, Sydney was recommended for a high risk brain surgery in hopes to treat her condition. The treatment was conducted at Stanford Medical Center, and upon completion seemed successful. This was short lived, for immediately after, Sydney began suffering from strokes for the next eight years that compromised her leg movement. 

Adults within their 50s find that strokes are life altering, causing problems in their personal and career paths. For Sydney, this only happened when she was 11, making her having to question her life goals and regular motivations. In her own words, "After that first stroke, I struggled to come to terms with a body that no longer felt like my own. To put it simply, even though I was alive, the goals I set for myself were not clicking the way they did pre-stroke".  

In order to combat these depressive feelings she took up therapeutic horseback riding due to her early childhood riding experience. She even attended the World Equestrian Games, where she saw disabled athletes engage in Para Dressage.  Allowing her to realize that her disability didn't mean the end of her dreams was the real game changer.

This pivotal movement is what lead to her riding down the centerline of an arena in the 2016 Rio Paralympic Games. Here are her remarks on participating in this beautiful event, "I was proving to the entire world that I was good enough to compete at the highest level, even though I was not a typical dressage rider. .....That afternoon in Brazil was a defining moment in my life. All the challenges I had faced could have meant taking a different road. Yet, in some ways, those challenges were why I was able to experience something few people in life do—the thrill of competing for your country against the best athletes in the world".  

She took seventh place out of twenty-two riders, and it was only three weeks after that victory that she and her family received an official invitation to personally meet President Barack Obama. 

Since these events, Sydney has been managing a healthy lifestyle by continuing to ride. She hopes that her and the efforts of many will aid other disabled patients to achieve their dreams. Specifically she hopes that "education and opportunities surrounding Para sports become more readily known and available to all those eligible to participate. It transformed my life and outlook. My wish is for everyone with rare disorders to discover avenues to take part in Para sports and start to live beyond expectations"! 

If you would like to hear more about Sydney and her journey, you can find information in her memoir Beyond Expectations. 

All patient information was self provided through access by an article published by National Organization for Rare Diseases.