Quinn

Quinn's Story

Quinn Stutes, aka: The MightyQuinn
Quinn lives with his mom, Sara and has an older sister named Maddie that lives nearby. Quinn absolutely loves to get visitors from his sister and grandmother and other relatives who live nearby.

Quinn was diagnosed with MPS ll at the age of 1 1/2 years old. He had severe sleep apnea, joint stiffness, speech and language delay, hearing loss, hyperactivity, a large belly, and numerous respiratory infections.
Quinn began his enzyme replacement therapy in October 2010 and within six months was already more flexible and was making improvements in every area except cognition because the weekly treatment didn’t target his brain disease. In Quinn’s younger years, Quinn attended a day program for mild to moderate disabilities, and could easily complete a 48 piece puzzle. Over the years that has changed significantly and now he is primarily nonverbal but still loves to vocalize repetitive sounds and communicates with his big brown eyes gazes. Quinn still loves very basic puzzles and to have Mom read him books. The Sloth book is his favorite. He also loves dogs and birds. As of now, Quinn has great mobility and will usually set the pace during the walks and we must acquiesce to his demands or be left behind.
Much research development is needed for our older boys in terms of their declining cognitive abilities and quality of life care. I’m hopeful that in due time scientists will find answers for The MightyQuinn. Otherwise, I just need more time in the race against the clock, because I never want to miss him and ultimately the goal is to provide better treatments for all who are affected.