Hi, my name is Jack Fowler. You can read more about my medical journey at www.caringbridge.org/visit/jackteaganfowler
My mom, Jamie, started this blog site to help spread the word about Hunter Syndrome and to share updates, photos, and videos of what’s going on in my world. I am 5 years old and have an ultra rare disease. I was diagnosed at 16 months of age when my parents kept wondering why I wasn’t developing age appropriately and why I couldn’t sleep through the night. My ENT doctor pegged the fact I had a lysosomal storage disease, and although he thought it was Hurler Syndrome or MPS I, we found out 2 weeks later that it was Hunter Syndrome, MPS II. My life has been eventful – filled with surgeries, infusions, trials, and therapies. Through it all I still continue to smile.