Life with The Leivas: Beach Bliss

Thursday, September 8, 2011

Beach Bliss

Over Labor Day weekend we headed to the Outer Banks for one last beach weekend before we leave North Carolina. It was an amazing weekend. We all thoroughly enjoyed the beach! We know first hand that a day at the beach can quickly become a day full of cranky kids and parents, lugging chairs/umbrellas/toys, etc. This trip we didn't have a single moment of that. We enjoyed every second of our time at the beach and it was actually relaxing! The weather was perfect. For some reason Peter was afraid of going in the water but Olivia loved it. She ran all over the beach and loved running up to the edge of the water and then back up the sand dunes. Peter and Olivia both enjoyed sliding down the dunes. Mike got to take a nap on the beach and I cuddled up with Olivia and read some Anne of Green Gables. We had great company, we shared the weekend with some very good friends and their 2 very patient dogs. It was fun to plan meals and cook together and play games together after the kids went to bed. Mike is surprisingly very good a Scrabble while I have the makings of a Taboo champion. The weather couldn't have been better and it wasn't crowded at all! We love the Outer Banks!

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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.