How does one measure a second chance at life? Can any collection of medical tests begin to express the sheer joy and elation in a return to the living? It is my hope that by sharing a “Pompe’s disease for me was a recurring pattern of countless heartbreaking attempts to participate, contribute and achieve gone awry. A life meant for living that would deteriorate with a persistent tenacity. It would play out again and again across the canvas of my life. Spirited, enthusiastic and in love with life, still my most personal endeavors, hopes, dreams, aspirations, nothing would remain unscathed.” What was my daily life like before I began Myozyme? “Think of birds…..land birds, tall tree dwellers, low ground hoppers…I felt much like them. My territory was clearly defined. I dwelled in a world that resided exclusively above my waist and as high as my arms could reach. If I dropped something…it was out of my world. If it was above my head…there was no getting on a chair or ladder to reach for it. If I fell I could not get up. Once, my interests and enthusiasm took me in a myriad of meaningful directions. I went snorkeling in countless exotic reefs across the world. Biked rugged hillsides of fern embraced forests. For years I worked on a cruise ship and traveled the world. I shared a weaving studio and wove incredible rugs from a lost tradition. My textiles hung in the American Craft Museum of New York. My art traveled in gallery shows as comparison of life before and now with enzyme replacement therapy you will understand and celebrate the magnitude of what so many have accomplished in the creation of Myozyme, and why I feel I have been given a second chance at life. A life again, rich in achievement, vitality, participation and a promising future.
Download PDF file to continue reading:
- English (259 kB)