Life with The Leivas

Sunday, August 2, 2009

Dear Friends and Family,

As many of you know we recently moved across the country to North Carolina so that Olivia could begin treatment for Sanfilippo Syndrome (for more information about Sanfilippo Syndrome go here http://www.mpssociety.org/content/4039/MPS_III/).
We've prepared a little slideshow to get you all up to speed on what we've been doing.

Click to play this Smilebox slideshow: Family Update

Make a Smilebox slideshow

We are contacted almost daily by different friends and family members asking what they can do to help us. We are overwhelmed by your care and concern for our family! There are plenty of things that you can do to help! We will try and list some of those things here but please be creative, this certainly isn't a comprehensive list!

-Keep us in your prayers!
-Send us mail! Olivia loves to get cards and pictures in the mail. She also really appreciates drawings or artwork so the next time your child creates a crayola masterpiece think about putting it in the mail to us before tossing it in the trash. We will include our address below.**warning about packages---right now Olivia's immune system is virtually non-existant, we have to be very careful about germs, please don't send any food or snacks (Olivia is fed strictly through her central line), if you send any clothing please be sure to wash it twice in hot water and then put it into a ziploc bag before mailing it**
-We are so very fortunate that insurance covers the majority of our expenses but there are still many expenses that are not covered by insurance. A trust has been set up in Olivia's name through the National Foundation for Transplants. You can make a tax deductible donation online by clicking here: http://www.transplants.org/donate/olivialeiva. We would actually much perfer that if you are going to give us money you do so through the foundation. It will make things much easier for us to follow the taxable income guidelines and it will allow you to claim an extra tax deduction.
-Keep in touch! Be sure to check out the blog to get the latest updates: www.mikelaurieandolivialeiva.blogspot.com

Our mailing address is: P.O. Box 62263, Durham, NC 27715

Thank you again for keeping us in your thoughts and prayers!

Love,
Mike, Laurie, Olivia, and Peter Leiva

1 comment:

Shannon said...: The slideshow is fantastic, Laurie!! I love seeing photos of your sweet Olivia. :) Grow cells grow!!!; Sunday, August 02, 2009 4:05:00 PM

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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.