On December 3rd, 2016, our lives were completely turned upside down. Our then 2-year-old son, Rowan, was diagnosed with a rare, terminal, genetic disease called Hunter Syndrome. It was the worst thing we'd never heard of.
WHAT IS HUNTER SYNDROME?
Hunter Syndrome (or MPS II) is a rare genetic disease that affects less than 500 boys in the United States. These boys 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 never develop speech, but some boys learn like a typical child 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.
Rowan is now 4 years old and receives a weekly infusion of a synthetic enzyme that helps flush the cellular waste out of his body, as well as weekly physical, occupational, and swim therapy. His infusion drug is the second most expensive drug on the market. Despite all he has been through, Rowan continues to be a vivacious, amazing ray of light to all he meets. It's incredibly hard to know him and not fall in love with him! Please help us give him the life that he deserves, a FULL life.
Your donations will help us offset the medical costs from all of his treatments, doctor visits, surgeries, therapy visits, etc, as well as help us get him to a clinical trial in Pittsburgh that we are trying very hard to get him into. A cure has been found, in Gene Therapy, and the families of our Hunter Syndrome boys are working very hard to raise the money to get this Gene Therapy into clinical trials. Gene Therapy is a one-time delivery of a normal copy of the defective gene which ideally causes the body to naturally produce the missing enzyme. It is the most promising ‘cure’ that these boys desperately need. Please visit www.projectalive.org for more information on this, and their amazing efforts.
Please help us give Rowan his life. We sincerely appreciate any kind thoughts, donations or prayers.