Kaylee Beausoleil here.
Sorry if I haven't written; it's been a terrible few weeks. We are still here at the shelter, don't know how much longer we will have to stay here. Very little in the way of money left; I feel as though I've failed my children in providing for them.
Haven't heard any word on how repairs to our home back in Baton Rouge, Louisiana, are progressing; parts of the city, that area in general, are still without power thanks to Hurricane Gustav. Very depressing.
Doesn't help that my scumbag of a husband, Ray, has run out on us; he couldn't be a man, face up to our youngest child's medical problems, so he vamoosed, like the wind. Now I'm having to face life's trials all alone and I'm scared, very scared!!
Kaysa has been fighting a cold; I've tried to catch it in time, but no luck. She's sniffling, sneezing, feeling miserable. I've taken her to the community clinic for low-income people, where they've given her some medication to alleviate the worst of the symptoms.
I tell them that she's a child who has special needs; she has a rare disease that's slowly killing her; people don't want to be near her, in case that whatever she has is catching (and it is not!). They treat her as though she has something like AIDS, and it's heartbreaking to see.
Kaysa's disease is getting worse. At the age of three, she has lost all ability to talk: no longer will I hear her soft, sweet voice tickle my ears. In time, she will forget how to swallow (and will then go on tube feedings when this occurs), walk, even breathe. When that happens, it means that death will surely follow shortly thereafter.
It's as if she's slowly reversing back to infancy. It's also akin to her having Alzheimer's disease. In fact, Niemann-Pick is often referred to "childhood Alzheimers" because the symptoms are often the same, even though Alzheimer's only strikes people in their middle-to-later years.
People tell me that my daughter looks healthy. That's the thing about this disease: unless they see her on her oxygen or see an IV line in her arm, they don't regard her as being ill because she looks so good most of the time. They don't know what she's going through, what I'm experiencing. I get so frustrated with them I want to pull their heads clean off their bodies!!
How can I tell them what Kaysa's going through in ways that they will understand?? When are they going to accept Kaysa as a child first instead of looking just at her illness?? She is NOT her illness; she's a child, first and formost!!
Well, I am going to see if I can find some work, try to make some semblence in this shaky time of economic worry! I have to provide for my little family somehow, even if it means standing on the streetcorner, holding a sign that reads: "Will Work For Food"!
Just keep me in your prayers; we really can use a miracle about now! Thanks, and may God bless you!
~Kaylee Beausoleil. :(
