Life with The Leivas: The Greatest Gift

Tuesday, December 16, 2008

The Greatest Gift

I truly believe that the greatest gift that Mike and I could have possibly given Olivia this Christmas is her brother. Mike and I were prepared for how much we would love and adore the newest member of our family but we were not at all prepared to see how much Olivia would absolutely adore her little brother. She gets so excited when we let her hold him that she starts trembling. The smile on her face is absolutely priceless. I feel so blessed that she seems to have made the transition from being the only child to the older child so easily! I am sure that later on there will be plenty of occasions and situations in which she is not so happy to have a little brother and I can't wait to show her this picture, maybe it will remind her how much she loves her brother after all....

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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.