Ryan Matthew Austin was welcomed into the world on August 25th, 2011. He was a perfect 7lbs, 2.5oz and 19 3/4 inches long. He had daddy’s eyes & mommy’s smile - he was the most beautiful gift we had ever received! Overwhelmed with joy, we had no idea that accompanying this precious little boy was a lifetime of unfathomable new challenges and hardships no one could have ever expected. A true blessing in disguise, this new life would also bring our family a newfound inner strength and a new appreciation for life, love, and community.
As Ryan continued to grow, he developed several health issues that seemed to just never go away. As a baby, he constantly battled severe sinus issues while also combating against chronic ear and upper respiratory infections; all resulting in four major surgeries by his second birthday! Although we had started to become familiar with all of Ryan’s health issues, nothing could have prepared us for the challenges we would soon learn we would face for the rest of his life. On December 11th, 2013 our worlds were completely turned upside down with just one phone call. I was at work when Ryan’s pediatrician called to inform me that she had received a call from Ryan’s geneticist stating that Ryan had been diagnosed with a genetic disorder called Lysosomal Storage Disorder. She continued to explain that Ryan had Hunter Syndrome, an extremely rare genetic disorder in which his body lacks the essential enzyme necessary to break down sugar molecules and turn them into waste for elimination. Because his body is unable to process these sugars, it causes the cells to build up to toxic levels in the body; leading to irreversible physical and mental damage. Ryan would slowly lose the ability to walk, talk, eat, play, and recognize the people he loves. Lastly, Ryan’s pediatrician informed me that Hunter Syndrome is a terminal disease in which there is currently no cure available and that Hunter Syndrome children have a life expectancy of their teen years, at best. With a heavy heart, I hung up and wondered what in the world we were going to do next.
After sharing the news with family and friends, we were completely overwhelmed by their love and support. With their help and encouragement, we began our mission to help find the cure for Hunter Syndrome. Since Ryan’s diagnosis, we have worked tirelessly towards spreading awareness and raising funds towards finding a cure. We have created the official Ryan Our Lion website so we can share Ryan’s story with the online community and spread awareness worldwide about this very rare, unknown disease. We have also partnered with the non-profit foundation Help Extinguish Hunter Syndrome to raise funds towards Gene Therapy Research, the potential cure for Hunter Syndrome. All proceeds from Ryan Our Lion fundraising events are donated towards finding the cure for Hunter Syndrome. By all of us coming together, we gather strength in our numbers and give all families affected by Hunter Syndrome hope that one day a method will be found to cure this devastating disease.
Ryan is currently undergoing several treatment plans to help manage his disease. Weekly IV infusions, countless doctor visits in Chicago, and multiple medications only helps slow the progression, but he is still showing the mental deterioration Hunter Syndrome causes. Without any changes in his treatments, Ryan’s life expectancy is at best his teen years.
Please join us in our mission to raise the funds needed to push Gene Therapy to human clinical trials. This is our chance to save countless lives and give those children affected by Hunter Syndrome a future to look
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forward to! I’d like to personally thank you for taking the time to read Ryan’s story. Each person who reads our story is one more person who is aware this disease exists, one step closer to finding a cure. I hope our story not only inspires you to help us spread awareness about Hunter Syndrome, but also inspires you to appreciate life, love, and community in your own life as well.