Life with The Leivas: Flowers worth the wait!

Tuesday, February 8, 2011

Flowers worth the wait!

When we were admitted to the hospital for Olivia's transplant they gave us strict instructions about everything, including limiting Olivia's exposure to fresh fruits, vegetables, and plants. The medical team told us when we were allowed to introduce each new fresh fruit and vegetable for Olivia. We were also told we could not have any plants or flowers inside our home. Mike would often spoil me by surprising me with fresh flowers but that stopped after Olivia's transplant. He surprised me with this beautiful bouquet the other day. We didn't specifically ask Olivia's doctor at Duke but I'm pretty sure that at 18 months after transplant we're ok.

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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.