Life with The Leivas: Thank You Lita

Tuesday, November 24, 2009

Thank You Lita

"Lita" is Olivia's special name for Mike's mom. It comes from the Spanish word "abuelita" which means granny. Olivia shortens that to "lita". It's a pretty cute nick-name (my mom is not so lucky, Olivia named my mom "pop pop." I think she was a little confused but the name has stuck).

Lita left today after being here to help out for almost 4 weeks. I can't believe that she was here for a month, in some ways it seems like the time has flown by but then in other ways it seems like it stood still. Having Lita here was very helpful to all of us! She basically moved in and unpacked everything at the new house. She washed and cleaned for hours. Everything we own has been in storage since June so it all had to be cleaned before we could let Olivia anywhere near it. Peter and Lita became roomies. They shuffled back and forth between the house in Fayettville and the apartment here so she really did live out of her suitcase for an entire month. I know that she enjoyed the time that she got to spend with Olivia and Peter and I know they enjoyed having her around. I know that she and Mike got to spend some quality time together. I am so grateful that she was here over these last few weeks especially. Olivia and I had some long days at the clinic and I'm so glad that she was here to be with Peter so that he wasn't stuck at the clinic with Olivia and I.

Thank you Lita! We hope to see you again soon!

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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.