Monday, May 18, 2009
MPS Awareness Day - May 15th
Friday May 15th was MPS Awareness Day. From the National MPS Society webpage:
Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.
The kids and I wore purple ribbons in honor of Waverly and Oliver (a friend's children who suffer from this disease).
Shannon and I went to high school together and were pretty good friends. We fell out of touch during college and the years right after college. I helped to plan our 10-year high school reunion in 2004 and got back in touch with Shannon at that time. She was a proud new mom to baby Waverly at that time. Fast-forward just a few years later.... I "found" Shannon again through a Google Search. I landed on her Blog (which was supposed to be an account of their family's travels) where she and her husband were just handed Waverly's diagnosis of MPS III. I began to read her blog daily, and was heartbroken to read that their second child, Oliver, also tested positive for MPS III.
As a mother, I just can't imagine being handed news that both of your precious children have a terminal disease. As a friend, I am heartbroken that such a wonderful person has to suffer.
You can read more about Waverly and Oliver at A Hundred For A Home - an awareness and fund-raising site for their family.