Life with The Leivas: Let's Be Specific

Tuesday, April 28, 2009

Let's Be Specific

If you've been following the blog you know that we're trying to get our insurance company to authorize a transplant for Olivia. At this point our insurance company has denied our initial request and we're currently appealing their decision. This part of the appeal process should take about 72 hours. Olivia's case is being sent to a peer review board. A practicing medical doctor (who is not affiliated with our insurance company) will review Olivia's history and the transplant request and then make a decision about wether or not the transplant will be authorized. Please pray that the doctor who is randomly selected to make this decision gives it serious thought and consideration. Please pray that God gives them wisdom and understanding and that they approve Olivia's transplant. This process started this morning so hopefully we should know something by Thursday so check back then for updates.

1 comment:

Ashley said...: Cute Blog Laurie, I sent you a facebook msg!; Tuesday, April 28, 2009 12:16:00 PM

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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.