Noah’s vibrant personality and infectious laugh brings joy everywhere he goes. His parents, Krystal and Aywon, are soaking up every moment with him before the effects of Hunter Syndrome slowly take parts of him.
Hunter Syndrome (MPS II) is a rare genetic disease that affects less than 500 boys in the United States. Boys with Hunter syndrome are missing an enzyme used to break down cellular waste. When that waste builds up, it leads to progressive damage throughout their little bodies. Some boys never develop speech, but some learn like a typical kid, then begin losing skills and what they’ve learned at a young age. They eventually lose the ability to walk, talk and eat. Most do not live to see their teen years.
Doctors believe that gene therapy is the cure these boys desperately need but lack the funding to bring the research to clinical trial. Caravan partnered with Project Alive to create a film to raise funds and awareness around Hunter Syndrome and to give boys like Sebastian a chance at life.