Donation Article

When I started this program, I did not realize how different my life would be. This Naglazyme drug has helped me physically. However, it helped me emotionally even more. I met a family from the Dominican Republic. This family had two kids with MPS VI. The family did not speak any English. Their names are Patricia and Harold. We stayed in the same hotel during the study. We started talking about our different cultures. I could not believe some of the stories that they told me. For example, they had to pull Patricia and Harold out of school, all because of their disability. In that country, people view us like we are freaks. It broke my heart when I heard about it. It was almost hard to believe, only because I live in the greatest country around and I never experienced that sort of treatment.

The family explained to me about their medical facilities. They said that there were no doctors that would work on Patricia or Harold. They had to frequently fly to Boston to get their medical needs met. When the study was over, we all went home to our own hospitals to receive our infusions closer to home. However, the Dominican Republic would not provide the enzymes for these kids. Harold has a tracheostomy, which requires more medical attention than Patricia. My mom, step-father and I all discussed the possibility of sponsoring this family. This meant the family would come to live with us. In order to help them and my parents out, I started this MPS6Cess Foundation to help with medical and living expenses for the family and me. As soon as this family is self-sufficient, I will turn the foundation into raising money for other MPS family needs and research.

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