This week, families around the world are sharing a campaign called Project Alive (ProjectAlive.org) to raise awareness of the rare disease Hunter Syndrome, also known as Mucopolysaccharidosis II, and to raise funds for research.
Events and activities across the United States, Europe, Canada and South America will focus the public’s attention on Hunter Syndrome through a powerful video, as well as clips from celebrities in support of the campaign.
Hunter Syndrome is a rare genetic disease that is severe and life-limiting. It causes progressive damage to the organs, bones, joints, airways, and in most cases, the brain. In most cases, progressive brain damage results in a life span into the early teens.
My son Michael is 3 and was diagnosed with Hunter Syndrome at 2. I’ve watched my son lose his ability to talk, go through multiple medical procedures and surgeries, have multiple therapies a week to help with his stiff joints and go to Joe DiMaggio Children’s Hospital every Thursday for a four-hour infusion.
Please help me raise awareness.
Danielle Pleffner, Cooper City