Life with The Leivas: Please Vote

Thursday, October 14, 2010

Please Vote

If you have a minute please consider voting in the LIVESTRONG Community Involvement Project for the SuperSibs Pediatric Oncology Sibling Support Program at Duke.
SuperSibs! provides ongoing, targeted support to an underserved and often unrecognized cancer survivor population: siblings of children with cancer. SuperSibs! ensures that these children, the “shadow survivors,” do not feel alone, insignificant or forgotten, and can face the future with strength, courage and hope.

http://vote.livestrong.org/applicants/155-duke-pediatric-blood-and-marrow-transplant-family/

1 comment:

Wendy Leiva said...: Done!; Friday, October 15, 2010 8:27:00 AM

Post a Comment

MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (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.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.