Life with The Leivas: More Prayers Please

Monday, April 20, 2009

More Prayers Please

We found out on Friday afternoon that our insurange company did not approve our treatment request for a blood-derived peripheral stem cell transplantation because it is not established as a proven treatment. The silver lining is that it was denied with appeal rights (appearently appeal rights aren't always granted). So we're fighting this, and fighting hard. Please pray that the insurance company will reverse their decision and approve the transplant!

1 comment:

Shannon said...: Hi. I found your blog via Penny. I have enjoyed reading your posts and looking at the photos of your adorable kids.; Tuesday, April 21, 2009 7:51:00 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.