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Karen Lynn Vidra, The Texas Tornado

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Kaysa's Story.
By Karen Lynn Vidra, The Texas Tornado
Thursday, June 12, 2008

Rated "G" by the Author.

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A little girl battles a rare and fatal disease, with her family by her side.

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.


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Reviewed by Rose Rideout 6/13/2008
Karen you may not realize it dear but you sure know how to inform us on things that need to be known. Thank you dear.

Newfie Hugs are on the way, Rose
Reviewed by Mr. Ed 6/13/2008
So very, very sad, my friend.
Reviewed by Flying Fox Ted L Glines 6/12/2008
Kaysee is a wonderful and compassionate mother. For at least the past 4 or 5 years, they have been researching for remedies for type C; here's a quote:

"Mice with Type C Niemann-Pick disease, a degenerative neurological disorder, were able to live longer when treated with a neurosteroid called allopregnanolone. Researchers at the University of California, San Francisco, found that the synthesis of neurosteroids is severely disrupted in mice with Type C Niemann-Pick, and found that replenishing the deficient allopregnanolone significantly delayed progression of the disease in some of the mice. The research was published in the July 2004 issue of Nature Medicine."

Kaysa has nothing to lose, so allopregnanolone might be worth a try, and UCSF might be contacted for new information (I'm sure they have made further progress since 2004).

Karen, this is the kind of writing which is helpful. Bless you.

Ted
Reviewed by Jeanette Cooper 6/12/2008
Karen, this is so heartbreaking. You've truly written her story so well. You also bring to our attention illnesses that I've never heard of, so in that respect your stories are educational.
Reviewed by Karla Dorman, The StormSpinner 6/12/2008
Karen,

Another sad one - I concur with Joyce, makes me appreciate my health, such as it is - well done.

(((HUGS))) and love, Karla.
Reviewed by Joyce Bowling 6/12/2008
Such a sad write, I don't think I have ever heard of this disease...makes one want to count their blessings over and over again, and be thankful for their health and their children's health. You've captured it well and allowed the reader a glimpse of the family life and how such an illness affects everyone in the family. Sorry I've not been around for a few days...it's been a busy week here trying to catch up on the garden work while it's not raining, expecting it to start again tomorrow and continue for a few days! So I'll be around more in the days to come...a touching write my friend, you amaze me with the depth of knowledge that you have and how you pour your heart into your stories...very informative!
Blessings from Ky.
Joyce B.
Reviewed by Michelle Kidwell Power In The Pen 6/12/2008
Powerful write about a little understood disease, I believe I had heard about a case in one of the many books I have read, but it is extremely rare, and a sad disease, thank you for reaching others with your words
God Bless
Michelle~

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