Support Rowan's Fight Against Hunter Syndrome

Rowan is a gregarious, loving, and joyful 10 year old boy. Rowan has a rare and progressively life-limiting genetic disease called Hunter Syndrome, or Mucopolysaccharidosis Type II (say that 3 times fast!). Hunter Syndrome currently has no cure, but there is one FDA approved treatment called Enzyme Replacement Therapy, which is delivered in the form of a weekly infusion. Rowan has received this treatment since his diagnosis at the age of 2.

Hunter syndrome is a rare genetic disorder in which your child's body doesn't properly break down (digest) certain sugar molecules. When these molecules build up in organs and tissues over time, they can cause damage that affects physical and mental development. Boys with the severe form of Hunter Syndrome do not usually live past their teenage years. There are only about 500 boys in the United States affected, and approximately 2,000 worldwide. Because of the rarity of this disease, the funding for cure and treatment research is left up to the parents and loved ones of those affected. Non-profit organizations like Project Alive and the Hunter Syndrome Foundation are working to help families and advocate for cure and treatment research. On top of this, the infusion drug administered during the weekly treatment is one of the most expensive drugs on the market today.

We are asking for your help to give our boys a chance to grow up and have the quality of life they deserve. There are 4 clinical trials currently active, and they are showing such promising results in improving the quality of life for our boys, so we have hope. But we need help and funding, and your donations mean the literal world to us.