Life with The Leivas: Thankful for....

Tuesday, November 23, 2010

Thankful for....

‎11/16/10--Thankful that Peter is cavity free and that we found a fantastic new dentist

‎11/17/10--Thankful for an afternoon without any extra curricular activities, therapy sessions or meetings and the time that I got to spend playing with the kids instead!

‎11/18/10--Thankful for olivia's teachers! They are fantastic and they both love Olivia so much!

‎11/19/10--I'm so thankful it is friday! We have had one crazy week!

‎11/20/10--Thankful for all the birthday wishes and the birthday date night with my hubby!

‎11/21/10--Thankful for this lazy weekend and so glad that next week is a short work week!

‎11/22/10--Thankful that we were finally able to go to Peter's 2 year well baby appointment, only 2 weeks late :)

11/23/10--Thankful for the special time Peter and I got to spend today with a friend's adorable infant son. We had so much fun

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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.