Kyle’s most significant hurdle is limited mobility, which is a common symptom of Hunter syndrome that can progressively worsen with age. A failed spine fusion that Kyle underwent in 2019 has left a lasting impact and recent concerns about intubation have rendered corrective surgery a risky endeavor. Kyle remains resolute as he copes with these challenges, relying on a walker, specialized shoes, and regular exercise to maintain his mobility. Despite the physical hardships, Kyle considers himself to be “one of the lucky ones” as he experiences a milder, attenuated form of the syndrome with fewer cognitive implications - enabling him to pursue education, graduate from college, and enjoy a career as an editor.

Beyond the physical challenges of the disorder, the lack of awareness surrounding Hunter syndrome has also impacted Kyle socially. In his words, “people don’t understand why I may look different or wear hearing aids or have to have appointments every Friday”.

Kyle has also had to make adjustments to his lifestyle to accommodate his changing physical capabilities: “I once was able to play soccer in my younger days, but running is not a possibility for me now. Even though I can’t do these sports anymore, I go to the gym whenever I can, ride my stationary bike and enjoy swimming in my pool in the summer. I try to keep moving my body as much as I can”. Kyle also feels fortunate that his line of work as an editor means that he can work from home, and he is grateful that his employer has been “very supportive”.

Despite the incredible progress made by patient advocacy groups, there is still a long way to go when it comes to the general public's knowledge of Hunter syndrome, and this lack of awareness also extends to many professionals in the medical field. In Kyle's words, “most have no experience treating a patient like me”.

Navigating the medical landscape is challenging in itself for Hunter syndrome patients, who are often treated by many different medical specialties due to the disorder's widespread impact on the body. Kyle's experience of having to explain his condition to the many different specialists he is referred to complicates his medical journey even further, and is an ongoing burden for many Hunter syndrome patients and their families. In spite of these challenges, Kyle expressed his profound gratitude towards his medical team, stating “I thank all the doctors, nurses, and research scientists who work so hard to help individuals like me”.

Although Hunter syndrome may often go unrecognized in some areas of the medical landscape, there has been promising progress when it comes to diagnostic testing and management of the disorder. Early in his journey, Kyle's family learned about his condition from a medical textbook and there were little to no options when it came to managing the disease. In Kyle's words, “we've come a long way since then”, as in today's landscape there are numerous courses of action available to manage Hunter syndrome, and the future promises even more opportunities in this regard. Kyle celebrates the progress that has been made since he was first diagnosed, explaining that “now that newborn screening is available to families, earlier diagnosis gives us more hope”.