Two of our 3 sons have Hunter Syndrome, a rare genetic disease, affecting almost exclusively boys. Hunter Syndrome is a regressive disease where a genetic mutation is present that causes their bodies to not produce an enzyme required to purge the body of cellular waste, simply called GAGs. As a result, their organs, joints, and bones are affected by this disease. Slowly these boys lose their ability to talk, walk, and maintain skills they developed as babies and toddlers. There is no cure. Our sons present with both the mild and severe cases of Hunter Syndrome after being diagnosed in October of 2010. Every day we live the ups and downs of this disease.
Simply, to treat and cure Hunter Syndrome. We started this non-profit for all boys affected by Hunter Syndrome. We don't want to lose our sons to this disease and neither does anyone else.