Only 100 people in the world have been diagnosed with this disease. Only 11 in The United States. Now imagine your two daughters have this disease.

The numbers and the story are staggering. Kristy Smith shared this information with me the other day about a young couple, Taija Rezac & Avram Stapf of Sioux Falls. Taija and Avram have two beautiful young girls who are fighting for their lives. Here is part of the story from their GoFundMe page.

Lil Tatym just turned 1 year old 4/18/2015.  A month before her 1st birthday in March 2016 Tatym had a Bone Marrow Transplant at the University of Minneapolis Children's hospital. She has a very rare fatal genetic disease called Fucosidosis, only 100 people in the world have and 11 in the United States, her and her sister are the 10th & 11th. Tatym was diagnosed with Fucosidosis in November of 2015, only after being tested because her sister Aiva (2 years old) was diagnosed with the month before in October.

You can read the entire story here and also help out with donations as well.

There will be a Benefit for Tatym and Aiva's Journey at Fresh Horses Saloon in Harrisburg, South Dakota Saturday, July 16th at 2:00 PM. They'll have a bean bag tournament, Silent Auction and several raffles.

Please share this with your Facebook friends to get the word out!


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