I have a little girl named Kaysa Marisse. She is a little over two years old now; in her brief life she's suffered so terribly.
It's breaking our hearts.
She was born with a little understood disease called Niemann-Pick disease. It is a genetic disorder that affects metabolism. It is a lysosome storage disease, meaning that there's an inability to break down and use fat (or cholesterol) in the body. It's caused by a genetic mutation. The three most common forms are types A, B, and C.
Kaysa has type C Niemann-Pick disease. This means that her body can't break down the cholesterol or fats; it causes harmful amounts of lipids to accumulate in her spleen, liver, bone marrow, lungs, and brain.
It is fatal.
Kids who have it usually don't live past the age of ten. We are lucky that Kaysa has lived this long; doctors don't think she'll live past six years of age.
We consider her a living miracle.
Because of her health, Kaysa doesn't go out much. She is prone to all sorts of bugs that may be out there. Her lungs are very weak. She's on supplimental oxygen a good part of the time. She is often in and out of the hospital for one thing or another.
Doctors don't think that our daughter will live to be six years old. If she does, we'll all be amazed.
Niemann-Pick is extremely rare: only about five hundred people worldwide have this condition. It is often referred to as childhood Alzheimer's disease because the degeneration is quite similar. It is a heartbreaking condition; we've aged twenty years because of it.
Now, we love Kaysa with all of our hearts, but the toll of her health issues has taken a hold of our family relationships with each other. My husband, Raymond, and myself fight constantly over the medical bills. Lately, I have been spending more time with my mom because I can't take his emotional tirades much longer.
The other children (Kenton, 3 and 5-year-old Korinne) are healthy (thank God), but I know they resent their little sister a lot because of her being so sick.
I will be writing more about Kaysa in the near future, so I can educate you about what it means to have a child with a disease like Niemann-Pick. It is something that we are still trying to come to terms with.
I wouldn't wish this on anybody!
~Written by Kaysee Elizabeth Beausoleil, Kaysa's mommy.