Life with The Leivas: Little Mama

Monday, May 25, 2009

Little Mama

I feel so lucky that I had a little girl before I had a little boy! Olivia loves to help out. She loves to get her baby doll and copy whatever I'm doing. Just as Peter grows and changes daily so does her baby. Her baby doll has graduated from bassinet to crib, the infant tub to the regular tub, laying down to sitting up, bottles to solids, just like Peter has. Sometimes I get a little sad watching her take such good care of her baby because I know that she'll never get to experience the joy of being a mother herself. Thankfully that sadness is tempered by knowing that she does get to experience having a little baby brother. It is the little things like this that allow me to see God's plan in our lives. If we had found out about Olivia's diagnosis sooner then Peter might not be a part of our family right now and Olivia wouldn't get to have this experience of being a "little mama" herself. Hope you enjoy this little glimpse of our little mama.

No comments:

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.