Judy Reichart here.
Hope this finds you well. Me, I am having good days, as well as bad. You see, I have a little son with a very rare medical condition that is fatal; doctors didn't think he will live to see the age of five.
He's beaten the odds by three years. He's eight years old. A little miracle child.
My son has a condition called PMS (no, not that kind, so stop thinking that right now!); this stands for Pelzeus-Merzbacher Syndrome. It is a rare neurodegenerative disease in the leukodystrophy family; it causes increasing disability and deterioation of his cognitive/physical skills, blindness, and loss of voice.
Eventually, the child affected becomes totally helpless to where he or she will need twenty four hour supportive care in order to stay alive.
It is a horrible way to live; I wouldn't want to wish this on my own worst enemy!
Because of his condition, Ethan is in and out of the hospital, for one thing or another. He was in the hospital for a month. He went in on Labor Day; he got out October 1. He had pneumonia.
The time before that, Ethan was in for four months, from December of last year to April: he had a leaky stomach tube; his skin broke down, and it caused a terrible bacterial infection that nearly killed him. He had to have some emergency surgery to get rid of the infected skin; now his stomach resembles a war zone; it's all covered with scars on top of scars.
He's finally getting a little stronger, staying awake more, laughing at any silly song we sing, or when we hold him in our arms, and swing him through the air. He loves that! His color's good; for that we are grateful.
There's no telling when Ethan will fall sick again. That's what makes his having Pelzeus-Merzbacher's so damned difficult to live with. It is one of the worst things that can happen to a parent because all the dreams you had for your child are crushed by one swift, terrible diagnosis that threatens to rock your world forever.
Well, our son's nutrition pump is singing again, so I will go now. Hopefully it's nothing more than a minor kink in the line; or maybe it's telling us that his feeding's about over. I will write in here again; hopefully I'll do so before Thanksgiving or Christmas. This could very well be his last one; I might as well make it as memorable as can be, so he will never forget it for the time he has left on this earth!
So long for now! God bless!
Love, your friend, Judy Reichart. :)
