“Last July, our 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type A. In one terrifying instant, we were told that we would have to watch her fade away before our eyes.
Eliza and other children with this disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death before they even reach their teens. This disease affects both genders, all races, all countries and continents. It is everywhere and the world needs to know.
Eliza Today and Her Future
Right now Eliza is a fun loving 4-year-old who loves to sing, run and MOST of all, cuddle. She loves to play dress up and horse around with her rowdy big brother Beckham. She is, however, beginning to show signs of the disease in her learning and attention. And if nothing changes, it will only get worse from here.
By age 6, most children with her disease have irreversible brain damage and lose the ability to speak. As the disease continues to tear through her brain and body, she will lose the ability to walk and eventually she won’t even be able to feed herself as seizures ravage her body.”
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With all the kids heading back to school, it has really hit home that this is it. This is my last year of being home with my daughter all day, everyday. Next year she will be heading off to school. Our home and church won’t be her whole world anymore. She will have teachers, friends, and experiences of which I am not a part. Daddy and I will still be her most important people for a while, but those days are numbered as well…
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