Olivia

Today's post will be a very serious. A friend of mine daughter Olivia will be starting a long process of medical treatments that will hopefully help her lead a more normal life. In October of 2008 she was diagnosed with a genetic disorder called 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.

Today Olivia is being admitted into a hospital where she with begin an experimental trial to help with her syndrome. Today she undergoes surgery to get her central line in. Tomorrow she will begin Chemotherapy.

I am asking that you please pray for Olivia and her family today, tomorrow, and over the next few months. I know they will greatly appreciate it.

If you would like to read more about their family and what they are going through please visit their blog Lifewiththeleiva's